Podcasts about Patient advocacy

Seizures, sleepless nights, and mysterious white patches on his skin marked the beginning of Daniel's journey with Tuberous Sclerosis Complex (TSC). Diagnosed at age 6, Daniel faced a childhood filled with MRIs, EEGs, and specialist visits, often requiring cross-country travel for coordinated care. In this moving episode of On Rare, David Rintell, Head of Patient Advocacy at BridgeBio, and Mandy Rohrig, Senior Director of Patient Advocacy at BridgeBio Gene Therapy, speak with Daniel, a 31-year-old living in Seattle, about growing up with TSC, the emotional toll of visible symptoms, and the stigma he faced from peers. He reflects on the cognitive and mood impacts of TSC, including OCD and outbursts, and how he often kept to himself to feel more accepted. Today, Daniel is an active advocate in the TSC community, emphasizing the importance of connection, representation, and finding support among those with shared experiences. As he puts it, “You have to find your people.” Che-Wei Chang, Principal Scientist at BridgeBio, presents a medical overview of Tuberous Sclerosis Complex (TSC), a rare genetic disorder marked by seizures and benign tumors throughout the body. TSC results from a spontaneous mutation in a single copy of the TSC1 or TSC2 gene, which normally inhibit mTOR, an enzyme that regulates cell growth. Loss of this inhibition leads to mTOR hyperactivation, leading to abnormal cell proliferation and tumors in the brain, kidneys, skin, and other organs. Diagnosis typically involves identifying tubers in the brain along with tumors in other organs and is confirmed through genetic testing. Treatments include mTOR inhibitors, which are effective against many TSC-related tumors, and anti-seizure medications, although drug resistance is common.

Risa Arin doesn't just talk about health literacy. She built the damn platform. As founder and CEO of XpertPatient.com (yes, expert with no E), Risa's taking a wrecking ball to how cancer education is delivered. A Cornell alum, cancer caregiver, and ex-agency insider who once sold Doritos to teens, she now applies that same marketing muscle to helping patients actually understand the garbage fire that is our healthcare system. We talk about why she left the “complacent social safety” of agency life, how her mom unknowingly used her own site during treatment, what it's like to pitch cancer education after someone pitches warm cookies, and why healthcare should come with a map, a translator, and a refund policy. Risa brings data, chutzpah, and Murphy Brown energy to the conversation—and you'll leave smarter, angrier, and maybe even a little more hopeful.RELATED LINKS• XpertPatient.com• Risa Arin on LinkedIn• XpertPatient & Antidote Partnership• XpertPatient Featured on KTLA• 2024 Health Award BioFEEDBACKLike this episode? Rate and review Out of Patients on your favorite podcast platform. For guest suggestions or sponsorship inquiries, email podcast@matthewzachary.com.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

This season on Nobody Should Believe Me, we tell the story of Lisa McDaniel, who crafted a public image as the Director of Patient Advocacy at the Guthy Jackson Foundation while concealing her conviction for child abuse more than a decade ago. We begin with an introduction to the McDaniel family: Lisa, her husband Carey, and their children—Mishelle, Angellyn, and Collin. While the unraveling of their family began when Collin was “diagnosed” with NMO (Neuromyelitis Optica), to understand the full story, we must go back to where it all began: Hazlehurst, Georgia. Andrea and our producer Myrriah travel with Mishelle–Lisa's courageous eldest daughter– to her mother's hometown, where they sit down with Lisa's younger sister, Sabrina. Sabrina recounts a childhood marked by emotional manipulation and physical abuse at the hands of her older sister. She walks us through Mishelle's early years, how, as a baby, she was often left with relatives for days at a time, and then through Lisa's troubled pregnancy with her second child, Angellyn. Stay tuned through the end of the episode for a preview of what's to come this season. *** Andrea's June 28th event with Lisa Jewell: https://townhallseattle.org/event/lisa-jewell/ Andrea's August 1st event with Gregg Olsen: https://www.libertybaybooks.com/event/west-sound-crime-con-2025-local-authors-gregg-olsen-and-andrea-dunlop Order Andrea's new book The Mother Next Door: Medicine, Deception, and Munchausen by Proxy.  Click here to view our sponsors. Remember that using our codes helps advertisers know you're listening and helps us keep making the show!   Subscribe on YouTube where we have full episodes and lots of bonus content.  Follow Andrea on Instagram: @andreadunlop Buy Andrea's books here.  For more information and resources on Munchausen by Proxy, please visit MunchausenSupport.com The American Professional Society on the Abuse of Children's MBP Practice Guidelines can be downloaded here.  *** This season covers sensitive subject matter involving allegations of child abuse, medical child abuse (also known as Munchausen by proxy), and the death of a minor. All information presented is based on court records, first-person interviews, contemporaneous documentation, and publicly available sources. The podcast includes personal statements and perspectives from individuals directly involved in or affected by these events. These accounts represent their experiences and interpretations, and some statements reflect opinions that may be emotionally charged. Where appropriate, the reporting team has verified claims through official records or corroborating sources. Nothing in this podcast should be interpreted as a legal conclusion or diagnosis. All subjects are presumed innocent unless convicted in a court of law. This podcast is intended for informational and public interest purposes. This podcast contains audio excerpts from two phone conversations recorded in the states of Georgia and Alabama, respectively. Both recordings were obtained by a third-party source, who acted in accordance with the relevant one-party consent laws of those states, which allow for the lawful recording of a conversation with the consent of one participant. These recordings were subsequently shared with the producers of this podcast after the fact, and were not made by or at the direction of the podcast team or its parent organization. The podcast producers have made good-faith efforts to confirm the legal compliance of the original recordings, and are presenting these materials in the context of public interest reporting. The inclusion of this audio is intended for journalistic, educational, and documentary purposes in alignment with the principles of fair use and First Amendment protections. Listeners are advised that the views expressed in the recordings are those of the individuals speaking and do not necessarily reflect the views of the producers or affiliated entities. Learn more about your ad choices. Visit podcastchoices.com/adchoices

Dr. Jamie Wells is back—and this time, she brought a book. We cover everything from biomedical design screwups to the glorified billing software known as the EHR. Jamie's new book, A Clinical Lens on Pediatric Engineering, is a masterclass in what happens when you stop treating kids like small, drunk adults and start designing medicine around actual human factors. We talk about AI in pediatric radiology, why drug repurposing might save lives faster than biotech IPOs, and the absurdity of thinking one-size-fits-all in healthcare still works.Jamie's a former physician, a health policy disruptor, a bioethicist, an MIT director, and a recovering adjunct professor. She's also a unicorn. We dig into the wonk, throw shade at bad design, and channel our inner Lisa Simpsons. This one's for anyone who ever wondered why kids' hospitals feel like hell and why “make it taste like bubblegum” might be the most important clinical innovation of all time. You'll laugh, you'll learn, and you might get angry enough to fix something.RELATED LINKSJamie Wells on LinkedInBook: A Clinical Lens on Pediatric Engineering (Amazon)Book on SpringerDrexel BioMed ProfileGlobal Blockchain Business CouncilJamie's HuffPost ArticlesFEEDBACKLike this episode? Rate and review Out of Patients on your favorite podcast platform. For guest suggestions or sponsorship inquiries, email podcast@matthewzachary.comSee Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

Why Are We Paying More for Worse Health? | ShiftShapersIn this episode of ShiftShapers, host David A. Saltzman welcomes Helene M. Epstein—writer, speaker, and patient advocate behind the Substack series Patient No More. Helene dives deep into America's epidemic of medical errors, misdiagnoses, and system failures. She breaks down why even the most advanced technology and training haven't improved patient safety, how profit-driven healthcare puts patients at risk, and—most importantly—what individuals can do to protect themselves and their families. From shocking statistics about misdiagnosis to the hidden realities of rural hospital closures, Helene provides practical advice and hope for patients who are ready to become their own advocates.

Erica Campbell walked away from corporate life, took a hard left from the British Embassy, and found her calling writing checks for families nobody else sees. As Executive Director of Pinky Swear Foundation, she doesn't waste time on fluff. Her team pays rent, fills gas tanks, and gives sick kids' parents the one thing they don't have—time. Then, breast cancer hit her. She became the patient. Wrote a book about it. Didn't sugarcoat a damn thing. We talk about parking fees, grief, nonprofit burnout, and how the hell you decide which families get help and which don't. Also: AOL handles, John Hughes, and letters from strangers that make you cry. Erica is part Punky Brewster, part Rosie the Robot, and part Lisa Simpson—with just enough GenX Long Island sarcasm to make it all land. This one sticks.RELATED LINKSPinky Swear FoundationThe Mastectomy I Always Wanted (Book)Erica on LinkedInThink & Link: Erica Campbell“Like the Tale of a Starfish” - Blog Post“Cancer Diagnosis, Messy Life, Financial Support” - Blog PostFEEDBACKLike this episode? Rate and review Out of Patients on your favorite podcast platform. For guest suggestions or sponsorship inquiries, email podcast@matthewzachary.com.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

In this episode, Dr. April Spencer discusses the evolving landscape of breast cancer, particularly among younger women, and the various lifestyle factors contributing to this trend. She emphasizes the importance of stress management, self-care, and setting boundaries to improve women's health outcomes.  This discussion also highlights: The emotional and physical challenges women face during a breast cancer diagnosis A multifaceted approach to breast cancer care, emphasizing the importance of support systems, the need for women to advocate for themselves, and the role of integrative medicine The significance of choosing the right medical team How healthcare providers are impacted by burnout Recent updates on mammogram guidelines and hormone therapy considerations for women Dr. Spencer's advice for those facing a breast cancer diagnosis  Show Notes:Learn more about Dr. Spencer and follow her on Instagram @dr.aprilspencer! Become a DUTCH Provider today to get access to free educational resources, expert clinical support, peer-reviewed and validated research, and comprehensive patient reports. 

June 5, 2025: Bill Russell sits down with Erica Olenski, VP at Finn Partners and Founder of August's Artists, Ironman athlete, and board-certified patient advocate, who brings a unique perspective from navigating the healthcare system through hundreds of overnight hospital stays with her son August, a four-time brain cancer survivor. Why does a family with an extensive hospital history still get treated like first-time visitors at check-in, and how might HIPAA compliance be unintentionally creating barriers to human connection in care? The conversation explores whether patients should control their complete medical records to share with AI assistants, the reality of managing a 60,000-page medical record delivered on CD-ROM, and practical solutions like reimagining emergency department processes for complex care families.  Key Points: 02:02 Erica's Son's Health Journey 09:08 The Role of Patient Advocates 13:41 Using AI as a Patient 21:54 August Artists: A Nonprofit Initiative 27:43 Rapid Fire Questions and Closing Remarks X: This Week Health LinkedIn: This Week Health Donate: Alex's Lemonade Stand: Foundation for Childhood Cancer

Patient advocate Tami Burdick discusses her article, "How collaboration saved my life from a rare disease doctors couldn't diagnose." Tami shares her personal and arduous journey with granulomatous mastitis (GM), a rare and poorly understood condition, and how embracing collaborative health care in three key ways led to her successful remission. She details the crucial partnership between her conventional Western medicine doctor, surgical breast oncologist Dr. Kelly McLean, and her functional medicine practitioner, Jared Seigler, which allowed for innovative testing and a broader perspective on her illness. Tami also highlights the power of patient-to-doctor collaboration, emphasizing how her own relentless research and self-advocacy were instrumental in uncovering answers that the traditional system initially missed, largely due to time constraints on physicians. Furthermore, she underscores the profound impact of patient-to-patient collaboration through her support group, where shared experiences and knowledge provided critical guidance and helped others navigate the complexities of GM. Tami's story is a testament to the potential of integrating different medical approaches, the necessity of patient empowerment, and a call for systemic changes in health care to foster more such collaborations, including better insurance coverage for alternative practices and more dedicated time for doctor-patient interactions. Our presenting sponsor is Microsoft Dragon Copilot. Want to streamline your clinical documentation and take advantage of customizations that put you in control? What about the ability to surface information right at the point of care or automate tasks with just a click? Now, you can. Microsoft Dragon Copilot, your AI assistant for clinical workflow, is transforming how clinicians work. Offering an extensible AI workspace and a single, integrated platform, Dragon Copilot can help you unlock new levels of efficiency. Plus, it's backed by a proven track record and decades of clinical expertise and it's part of Microsoft Cloud for Healthcare–and it's built on a foundation of trust. Ease your administrative burdens and stay focused on what matters most with Dragon Copilot, your AI assistant for clinical workflow. VISIT SPONSOR → https://aka.ms/kevinmd SUBSCRIBE TO THE PODCAST → https://www.kevinmd.com/podcast RECOMMENDED BY KEVINMD → https://www.kevinmd.com/recommended

Allyson with a Y. Ocean with two Ls. And zero chill when it comes to changing the face of cancer care. Dr. Allyson Ocean has been quietly—loudly—at the center of every major cancer breakthrough, nonprofit board, and science-backed gut punch you didn't know you needed to hear. In this episode, she joins me in-studio for a conversation two decades in the making. We talk twin life, genetics, mitochondrial disease, and why she skipped the Doublemint Twins commercial but still ended up as one of the most recognizable forces in oncology. We cover her nonprofit hits, from Michael's Mission to Let's Win Pancreatic Cancer to launching the American Jewish Medical Association—yes, that's a thing now. We get personal about compassion in medicine, burnout, bad food science, and microplastics in your blood. She also drops the kind of wisdom only someone with her résumé and sarcasm can. It's raw. It's real. It's the kind of conversation we should've had 20 years ago—but better late than never.RELATED LINKS:– Dr. Allyson Ocean on LinkedIn– Let's Win Pancreatic Cancer– NovoCure Leadership Page– Michael's Mission– American Jewish Medical Association– The POLG Foundation– Cancer Buddy App (Bone Marrow and Cancer Foundation)– Dr. Ocean at OncLiveFEEDBACK:Like this episode? Rate and review Out of Patients on your favorite podcast platform. For guest suggestions or sponsorship inquiries, email podcast@matthewzachary.com.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

Sponsored by Invivyd, Inc.Nobody wants to hear about COVID-19 anymore. Especially not cancer patients. But if you've got a suppressed immune system thanks to chemo, radiation, stem cell transplants—or any of the other alphabet soup in your chart—then no, it's not over. It never was. While everyone else is getting sweaty at music festivals, you're still dodging a virus that could knock you flat.In this episode, Matthew Zachary and Matt Toresco say the quiet part out loud: many immunocompromised people may not even know they have options beyond vaccines. Why? Because the system doesn't bother to tell them. So we're doing it instead. We teamed up with Invivyd to help get the word out about tools other than vaccines that can help prevent COVID-19. We break down the why, the what, and the WTF of COVID-19 risk for cancer patients and why every oncologist should be talking about this.No fear-mongering. No sugarcoating. Just two guys with mics who've been through it and want to make sure you don't get blindsided. It's fast, funny, and furious—with actual facts. You've got more power than you think. Time to use it.RELATED LINKSExpand Their OptionsInvivydMatt Toresco on LinkedInOut of Patients podcastFEEDBACKLike this episode? Rate and review Out of Patients on your favorite podcast platform. For guest suggestions or sponsorship inquiries, email podcast@matthewzachary.com.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

Anders Sorensen is a Danish clinical psychologist with a PhD in psychiatry who has dedicated his career to an area that most professionals won't touch—and that most patients don't even know exists. He's one of the world's leading authorities on psychiatric drug dependence and the complex science of safely discontinuing these medications. His upcoming book represents years of clinical research and hands-on experience helping hundreds of people navigate what may be one of the most misunderstood medical challenges of our time. This isn't just another podcast about mental health. This is a conversation that could fundamentally change how you understand psychiatric medications, withdrawal, and what's actually happening in the brains and bodies of millions of Americans right now. Dr. McFillin and Anders dive into territory that most medical professionals avoid—not because it's controversial, but because it requires a level of specialized knowledge that simply doesn't exist in mainstream medicine. What you'll hear challenges everything you've been told about these medications, reveals why so many people feel "trapped" on their prescriptions, and exposes a gap in medical care that's affecting countless lives.Substack: https://crossingzero.substack.com/X: https://x.com/_AndersSorensenRADICALLY GENUINE PODCASTDr. Roger McFillin / Radically Genuine WebsiteYouTube @RadicallyGenuineDr. Roger McFillin (@DrMcFillin) / XSubstack | Radically Genuine | Dr. Roger McFillinInstagram @radicallygenuineContact Radically GenuineConscious Clinician CollectivePLEASE SUPPORT OUR PARTNERS15% Off Pure Spectrum CBD (Code: RadicallyGenuine)10% off Lovetuner click here Dr. Roger McFillin / Radically Genuine WebsiteYouTube @RadicallyGenuineDr. Roger McFillin (@DrMcFillin) / XSubstack | Radically Genuine | Dr. Roger McFillinInstagram @radicallygenuineContact Radically GenuineConscious Clinician CollectivePLEASE SUPPORT OUR PARTNERS15% Off Pure Spectrum CBD (Code: RadicallyGenuine)10% off Lovetuner click here

EPISODE DESCRIPTIONLisa Shufro is the storyteller's storyteller. A musician turned innovation strategist, TEDMed curator, and unapologetic truth-teller, Lisa doesn't just craft narratives—she engineers constellations out of chaos. We go way back to the early TEDMed days, where she taught doctors, scientists, and technocrats how not to bore an audience to death. In this episode, we talk about how storytelling in healthcare has been weaponized, misunderstood, misused, and still holds the power to change lives—if done right. Lisa challenges the idea that storytelling should be persuasive and instead argues it should be connective. We get into AI, the myth of objectivity, musical scars, Richard Simmons, the Vegas healthcare experiment, and the real reason your startup pitch is still trash. If you've ever been told to “just tell your story,” this episode is the permission slip to do it your way. With a bow, not a violin.RELATED LINKSLisa Shufro's WebsiteLinkedInSuper Curious ArchiveEight Principles for Storytelling in InnovationStoryCorps InterviewCoursera Instructor ProfileWhatMatters ProjectFEEDBACKLike this episode? Rate and review Out of Patients on your favorite podcast platform. For guest suggestions or sponsorship inquiries, email podcast@matthewzachary.com.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

Courtney Turich shares the journey of Cooler Heads, the startup behind a scalp cooling device that helps chemo patients keep their hair and dignity.   From early challenges to reaching over 100 infusion centers, she reveals how awareness, advocacy, and social media-fueled their growth.   We explore the emotional impact of scalp cooling, the barriers to oncologist adoption, and the company's commitment to patient education.   Courtney also offers career advice for breaking into medical sales, thriving in startups, and leading with purpose.   This is a must-listen for anyone who wants to build a mission-driven career, create a real impact in healthcare, or understand what it takes to grow a successful medical startup.   Connect with Courtney: LinkedIn Connect with Me: LinkedIn   Love the show? Subscribe, rate, review, and share! Here's How » Want to connect with past guests and access exclusive Q&As? Join our EYS Skool Community today!

What happens when you blend the soul of Mr. Rogers, the boldness of RuPaul, and just a pinch of Carrie Bradshaw? You get Sally Wolf.She's a Harvard and Stanford powerhouse who ditched corporate media to help people actually flourish at work and in life—because cancer kicked her ass and she kicked it back, with a pole dance routine on Netflix for good measure.In this episode, we unpack what it means to live (really live) with metastatic breast cancer. We talk about the toxic PR machine behind "pink ribbon" cancer, how the healthcare system gaslights survivors when treatment ends, and why spreadsheets and dance classes saved her sanity. Sally doesn't just survive. She rewrites the script, calls out the BS, and shows up in full color.If you've ever asked “Why me?”—or refused to—this one's for you.RELATED LINKS:Sally Wolf's WebsiteLinkedInInstagramCosmopolitan Essay: "What It's Like to Have the 'Good' Cancer"Oprah Daily Article: "Five Things I Wish Everyone Understood About My Metastatic Breast Cancer Diagnosis"Allure Photo ShootThe Story of Our Trauma PodcastFEEDBACK:Like this episode? Rate and review Out of Patients on your favorite podcast platform. For guest suggestions or sponsorship inquiries, email podcast@matthewzachary.com.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

On this episode, Tania Simoncelli (Vice President, Translational Impact and Engagement, Chan Zuckerberg Initiative) and Nasha Fitter (Co-founder & CBO, Citizen Health and Co-founder & CEO, FOXG1 Research Foundation) join forces to discuss how rare disease patient advocacy has transformed over time and how the biopharmaceutical industry should adapt to better meet the needs of today's patients. They dive deeper into the evolution of rare disease patient advocacy groups, why industry must move beyond the hyperfocus on “blockbuster drugs” to make progress in rare disease research, and how advancements in rare disease treatments can benefit the clinical research ecosystem for all.

In this episode of the Manta Cares's Patient from Hell Podcast Club, host Mike Lynn engages with Sheila Goodrow, a metastatic breast cancer advocate, to discuss the importance of mental health resources for cancer patients. They explore Sheila's personal journey with cancer, the challenges of accessing mental health care, and the role of advocacy in healing. The conversation emphasizes the need for comprehensive support systems for patients and caregivers alike, highlighting the significance of mental wellness in the cancer journey.This Podcast Club accompanies Patient from Hell podcast Episode 84: Managing Insomnia and Mental Health in Cancer Care with Dr. Cara Bohon.00:00 Introduction to Patient Advocacy and Podcast Goals02:00 Sheila's Journey with Metastatic Breast Cancer03:52 Mental Health Challenges in Cancer Care09:46 Exploring Therapy and Mental Health Resources14:03 Accessibility of Mental Health Services for Patients17:58 The Role of Advocacy in Personal Healing19:59 Conclusion and Final Thoughts on WellnessConnect with Us:Enjoyed this episode? Make sure to subscribe, rate, and review! Follow us on Instagram, Facebook, or Linkedin @mantacares and visit our website at mantacares.com for more episodes and updates.Disclaimer:All content and information provided in connection with Manta Cares is solely intended for informational and educational purposes only. This content and information is not intended to be a substitute for medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.This episode was supported by an award from the Patient-Centered Outcomes Research Institute.

In this episode of the Manta Cares Patient from Hell Podcast Club, host Mike Lynn engages with Brenda Elveen, a breast cancer survivor and patient advocate. They discuss the challenges faced by cancer patients, including navigating the healthcare system, the impact of insurance on treatment options, and the importance of community support. Brenda shares her personal journey through cancer treatment and emphasizes the need for patient empowerment and effective communication with loved ones. The conversation highlights the transformative power of advocacy and the positive outcomes that can arise from difficult experiences.This Podcast Club accompanies Patient from Hell podcast Episode 91 "Personalized Oncology: General Surgeon Discusses Modern Breast Cancer Treatment" with Dr. Anitha Srinivasian.00:00 Introduction to Patient Advocacy and Personal Stories02:52 Navigating the Cancer Diagnosis Journey05:51 The Impact of Insurance on Treatment Decisions09:14 Understanding Treatment Options and Patient Empowerment11:57 The Role of Community and Support in Cancer Care15:02 The Importance of Communication with Loved Ones18:01 Finding Purpose in Advocacy and Personal GrowthConnect with Us:Enjoyed this episode? Make sure to subscribe, rate, and review! Follow us on Instagram, Facebook, or Linkedin @mantacares and visit our website at mantacares.com for more episodes and updates.Disclaimer:All content and information provided in connection with Manta Cares is solely intended for informational and educational purposes only. This content and information is not intended to be a substitute for medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.This episode was supported by an award from the Patient-Centered Outcomes Research Institute.

In our Patient from Hell Podcast Club episode, Ashley Dedman, vice president of mission delivery at Living Beyond Breast Cancer. They discuss the importance of patient advocacy, particularly in the context of breast cancer and DCIS (ductal carcinoma in situ). Ashley shares her personal journey with cancer as a caregiver and advocate, emphasizing the need for timely information and emotional support for patients and their families. The conversation highlights the evolving landscape of cancer treatment, the significance of understanding individual experiences, and the critical role of mental health in navigating cancer journeys.Chapters00:00 Introduction to Patient Advocacy and Podcast Goals03:03 Understanding DCIS: A Deep Dive into Breast Cancer06:03 Personal Stories: The Impact of Cancer on Families12:06 The Role of Advocacy in Cancer Care17:51 Navigating Treatment Decisions and Patient Empowerment24:06 Mental Health and Support in Cancer JourneysConnect with Us:Enjoyed this episode? Make sure to subscribe, rate, and review! Follow us on Instagram, Facebook, or Linkedin @mantacares and visit our website at mantacares.com for more episodes and updates.Listen Elsewhere: Website: https://mantacares.com/pages/podcast?srsltid=AfmBOopEP5GJ-Wd2nL-HYAInrwerIVhyJw67salKT-r9Qb_gadBvbHie YouTube: https://youtu.be/2SxvTqJht34?si=2U_98RfJJeWkTaT3 Spotify: https://open.spotify.com/episode/3TR1lFLtf6em5YyKtlWy2L?si=6ma-9g_wTIWTCLmHiHF_Aw Apple: https://podcasts.apple.com/us/podcast/navigating-cervical-cancer-screening-surgery-and/id1622669098?i=1000706666920 Disclaimer:All content and information provided in connection with Manta Cares is solely intended for informational and educational purposes only. This content and information is not intended to be a substitute for medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.This episode was supported by an award from the Patient-Centered Outcomes Research Institute.

In this conversation, Dr. Jannine Krause sits down with Jennifer Brower as she shares her personal journey through chronic illness, including Lyme disease, mold toxicity, and the aftermath of COVID-19. She discusses the challenges of misdiagnosis and the emotional toll of navigating the healthcare system. Jennifer emphasizes the importance of finding the right healing modalities, building a supportive community, and advocating for oneself in medical settings. She also highlights the significance of emotional health and the need for personalized approaches to wellness. We dive deep into:

On this episode of Cheat Codes, guest host Janie Davis, Director of Patient Advocacy at Agios Pharmaceuticals, is joined by sickle cell advocates Teonna Woolford, Cassandra Trimnell, and Rae Blaylark discuss the challenges and rewards of sickle cell advocacy. They delve into personal journeys, the nuances of advocacy, and the importance of self-care. The conversation highlights the power of community, the significance of setting boundaries, and the need for therapeutic support. The advocates also reflect on the impact of their work and offer advice for the next generation of sickle cell advocates.   SHOW DESCRIPTION Cheat Codes is intended for patients, caregivers, providers, and the greater community of people who are impacted by Sickle Cell Disease.  Each episode, Cheat Codes strives to provide listeners with critical education, the latest scientific updates, and voices from the Sickle Cell community.     Join an inclusive community and build connections with other hemolytic anemia allies by following @AllyVoicesRising on Instagram.   TRANSPARENCY STATEMENT  Cheat Codes: A Sickle Cell Podcast is made possible by Agios Pharmaceuticals Inc. Visit Agios.com to learn more. The following Agios-supported programs are intended for informational and educational purposes only and are not intended as medical advice. Please speak with your healthcare professional before making any treatment decisions. Host and guests featured in this episode have been compensated for their time.  

Episode DescriptionAudra Moran is the President and CEO of OCRA—Ovarian Cancer Research Alliance—which means she spends her days doing things most of us wouldn't survive five minutes doing: merging nonprofits, leading national patient support programs, funding lifesaving research, surviving pharma grant hell, and trying to reach every woman in America who might be slipping through the cracks. We talk about her time working with the Helen Keller National Center (yes, she knows finger spelling), her accidental journey into cancer nonprofit leadership, the weirdness of dermoid cysts, the ridiculousness of writing grants, and the absolute hellscape of diagnosis delay. Oh, and the fallopian tubes. You'll never look at them the same way again.This episode is funny, raw, deeply personal, and loaded with Gen X movie references and random facts about Paul Rudd, Terminator 2, and flipbook apps at 3am. Audra drops wisdom, humility, and a few hot takes on AI, advocacy, and what it really means to lead when the boulder keeps rolling downhill.RELATED LINKSAudra Moran on LinkedInOvarian Cancer Research Alliance (OCRA)Audra's profile on OCRACURE Today interview: Leading the FightOCRA + AI & Data: Overlooked PodcastFEEDBACKLike this episode? Rate and review Out of Patients on your favorite podcast platform. For guest suggestions or sponsorship inquiries, email podcast@matthewzachary.comSee Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

Getting a diagnosis should feel like the beginning of healing—but for many living with chronic illness, it's just the start of a much longer, messier road.In this episode, Lyndsay Soprano sits down with Angel Parker from the Netflix documentary Diagnosis, for a raw, honest conversation about what it really means to live with chronic pain and illness. From the emotional exhaustion of being dismissed by doctors to the quiet heartbreak of not being believed by the people closest to you, this conversation doesn't shy away from the hard stuff. They talk about what happens when your body betrays you, when your mind starts to spiral, and when your world gets smaller because of pain.But this isn't just about struggle—it's about survival. About building your own village when the system fails you. About learning to advocate for yourself, even when your voice shakes. About navigating the anxiety, the food triggers, the family dynamics, and the invisible weight you carry every single day.Lyndsay and Angel also touch on the global gaps in healthcare, the mental toll of feeling alone in your illness, and the little things—like community, connection, and shared experience—that make all the difference. It's not tied up in a bow. It's real. And it just might make you feel a little more seen.Find Angel Parker Online Here:Instagram: @angelbangelllInstagram: @evolvetherapylvFind The Pain Game Podcast Online Here:Website: thepaingamepodcast.comInstagram: @thepaingamepodcastFacebook: The Pain Game PodcastLinkedIn: Lyndsay SopranoEpisode Highlights:(00:00) Introduction to Chronic Pain and Healing(02:35) The Journey to Diagnosis(10:18) Living with Chronic Pain: Personal Stories(16:45) Mental Health and Chronic Illness(20:32) Navigating Healthcare Systems(26:49) Understanding CPT2 and Dietary Needs(31:22) The Power of Community and Support(37:23) Final Thoughts and Encouragement

Christine Verini is a pharmacist by training, a nonprofit CEO by title, and an unapologetic empath by design. She now leads CancerCare, one of the oldest, least-known, and most impactful organizations in the country that actually helps real cancer patients deal with the practical garbage no one likes to talk about—like paying rent, affording a ride to chemo, or feeding their kids.We talk about her career pivot from industry to impact, what it's like trying to scale empathy without losing your soul, and the daily gut-punch of knowing there are millions of people who still have no idea that CancerCare exists. Christine gets real about leadership, advocacy, burnout, and why being “pan-cancer” matters more than ever in a world obsessed with biomarkers, buckets, and branding.She also dishes on what AI gets dead wrong, what patients actually want when they call for help, and why “ghosting” someone with cancer is still a thing. Buckle up. This one's packed with heart, brains, and a little righteous rage.RELATED LINKSCancerCareChristine Verini on LinkedInChristine's CEO Announcement – PR NewswireCancer Health 25: Christine VeriniChristine on HealthyWomenBIO Convention Speaker ProfileFEEDBACKLike this episode? Rate and review Out of Patients on your favorite podcast platform. For guest suggestions or sponsorship inquiries, email podcast@matthewzachary.comSee Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

What do you do when your pain becomes so intense, so overwhelming, that the only place left to turn is the emergency room—and even that doesn't feel safe?In this raw and revealing episode, Lyndsay Soprano opens up about her own lived experience with chronic pain, including CRPS and Lyme disease, and the harsh reality of seeking help in an emergency medical system that often doesn't know what to do with people like her. The ER isn't always a place of comfort—it can be cold, dismissive, and downright dangerous when you're already at your breaking point.She's joined by Dr. Jim Keany, an emergency physician who brings honesty and insight to the conversation. Together, they unpack the disconnect between chronic pain patients and emergency care providers, the emotional toll of pain that goes far beyond the physical, and the desperate need for a healthcare system that sees people as whole humans—not just symptoms.Lyndsay and Dr. Keany discuss the deeper layers of chronic pain—how trauma can amplify it, how isolation can worsen it, and how the system often misses the mark. They touch on the struggles of medication management, the power of journaling, and how tools like hypnosis can actually help. Most of all, they stress the importance of treating the whole person, not just the symptoms. With empathy, advocacy, and even a little hope, healing becomes more possible.If you've ever felt dismissed, gaslit, or broken by your pain—or by the people meant to help you, this episode is for you.Find Dr. Jim Keany Online Here:LinkedIn: Dr. Jim KeanyFind The Pain Game Podcast Online Here:Website: thepaingamepodcast.comInstagram: @thepaingamepodcastFacebook: The Pain Game PodcastEpisode Highlights:(00:00) Introduction to Chronic Pain and Trauma(03:04) Emergency Situations and Pain Management(05:54) The Role of Emergency Medicine in Chronic Pain(08:48) Understanding Pain: Psychological and Physical Aspects(12:00) Navigating the Healthcare System(14:57) Alternative Pain Management Strategies(17:51) The Importance of Whole Person Care(21:00) Supporting Loved Ones in Chronic Pain(23:54) The Role of Journaling in Pain Management(26:50) Global Perspectives on Pain and Suffering(30:03) Hope and Future in Pain Management

Equity is not just a box to check; it is the framework for lasting change. In this week's BackTable podcast, guest host Dr. Veronica Lerner speaks with Dr. Ebony Carter, a high-risk obstetrician and Division Director for Maternal-Fetal Medicine at the University of North Carolina at Chapel Hill. Dr. Carter shares insights into her career journey, which was influenced by her mother's activism in health equity, her work on reproductive health disparities, and community engagement projects. ---SYNPOSISThe conversation underscores the importance of patient participation and agency in clinical decision-making. Dr. Carter and Dr. Lerner also discuss the development of an equity rubric for peer-reviewed journals, highlighting the need for inclusive and intentional research practices. They explore practical applications of the rubric, including the proper acknowledgment of contributors to foundational concepts. The episode further delves into Dr. Carter's mentorship initiatives at the Green Journal and her guiding philosophy of pursuing impactful, community-driven work rooted in passion and purpose.---TIMESTAMPS00:00 - Introduction02:06 - Dr. Carter's Journey and Inspiration05:19 - Community Engagement and Health Equity06:19 - Patient Advocacy and Shared Decision Making08:54 - Collaborative Research and Community Partnerships16:58 - Addressing Bias in Medical Practice22:12 - Equity in Academic Publishing28:26 - Diversifying the Peer Review Pool30:33 - Creating and Implementing the Equity Rubric31:17 - The Impact and Application of the Equity Rubric33:31 - Personal Reflections on Equity and Research35:25 - Citing Foundational Work38:48 - Mentorship and Training Future Leaders47:05 - Career Transitions and Future Goals52:36 - Final Thoughts and Advice for Aspiring Professionals---RESOURCESFull Equity Rubric:https://journals.lww.com/greenjournal/Documents/OnG_Equity_Rubric_1.pdf ​Equity Rubric Introduction Video:https://youtu.be/Jh5_L-pYkuE?si=JREjSSCr98jqjVVB Equity Rubric Introduction Video Slide Deck:https://journals.lww.com/greenjournal/Documents/Green%20Journal%20Equity%20Rubric%20YouTube_final_2022_01_16%20(Slides).pdf

BrainStorm wants to hear from you! Send us a text.in this episode of the "BrainStorm" by UsAgainstAlzheimer's, George Vradenburg, Co-founder and Chairman of UsAgainstAlzheimer's, and Russ Paulsen, the organization's Chief Operating Officer, discuss the impact of the Trump administration's policies on Alzheimer's research with host Meryl Comer. The conversation highlights the systematic dismantling of the National Institutes of Health (NIH) and other critical agencies, which threatens to undermine Alzheimer's research and public health. Vradenburg and Paulsen express concerns about the lack of transparency in the reorganization and the potential negative effects on drug reviews and approvals due to significant cuts at the FDA. They highlight the importance of protecting key programs that support seniors and the potential global impact of these policy changes. Despite the challenges, both Paulsen and Vradenburg are optimism about scientific advances in diagnosing and treating Alzheimer's, including the development of blood tests and new treatments. Hear the call to action for listeners to advocate for continued support for Alzheimer's research and to contact their members of Congress to ensure that funding remains a priority. This is a must listen episode!  This episode is sponsored by Genentech.Support the show

Patient Advocacy in the Hospital and Society, with Ashlee Murray, MD, MPH 

On this episode, guest host Janie Davis, Director of Patient Advocacy at Agios Pharmaceuticals, discusses the Life Stage Model initiative with patient advocacy leaders, Tamara Scriver and Alejandra Watson. They delve into the work of the PKD Advocacy Advisory Council (AAC) and how it addresses the unmet needs of the community. The conversation highlights the development of the Life Stage Model, which categorizes the physical and psychosocial symptoms of PKD across different life stages.    SHOW DESCRIPTION Just Listen: Voices of PK Deficiency is a podcast about Pyruvate Kinase Deficiency and is intended for patients, caregivers, providers, and the greater community of people who are impacted by PKD.  Each episode, Just Listen: Voices of PK Deficiency strives to provide listeners with critical education, the latest scientific updates, and voices from the PKD community.  Learn more about PKD by visiting KnowPKDeficiency.com or connect with KnowPKDeficiency on Facebook: bit.ly/KnowPKD and Instagram shorturl.at/gmFT4.   Join an inclusive community and build connections with other hemolytic anemia allies by following @AllyVoicesRising on Instagram.   TRANSPARENCY STATEMENT  Just Listen: Voices of PK Deficiency and KnowPKDeficiency.com are made possible by Agios Pharmaceuticals Inc. Visit Agios.com to learn more. The following Agios-supported programs are intended for informational and educational purposes only and are not intended as medical advice. Please speak with your healthcare professional before making any treatment decisions. Guests Tamara Schryver and Alejandra Watson have been compensated for their time.   

Jennifer Finkelstein is not here for your pity, your pinkwashed slogans, or your performative awareness campaigns. She's a 20-year young adult breast cancer survivor who turned trauma into a blueprint for action and built 5 Under 40, a no-BS nonprofit supporting women diagnosed with breast cancer under 40.In this episode, we go full Gen X therapy session—from SNL nostalgia and cold caps to the absurdity of finding out you have cancer while looking for the remote. Jen drops real talk about founding a nonprofit when nothing existed for her age group, why mental health support isn't optional, and how passing down designer scarves can mean arming someone for battle.If you're looking for honesty, grit, and a few inappropriate jokes about gastroenterology, this one's for you. You'll laugh, you might cry, and you'll definitely leave knowing why Jennifer Finkelstein is a survivor, a fighter, and a damn legend.RELATED LINKS5 Under 40 FoundationJennifer Finkelstein on LinkedInAbout 5 Under 40: Board of DirectorsDan's Papers: 5 Under 40 Supports Young Breast Cancer SurvivorsFEEDBACKLike this episode? Rate and review Out of Patients on your favorite podcast platform. For guest suggestions or sponsorship inquiries, email podcast@matthewzachary.com.Let me know if you want shorter pull quotes, audiogram text, or promotional copy for LinkedIn, Instagram, or your newsletter.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

146 Navigating the End of Life: Insights from Hospice Nurses - Part 2 with Meg Johnson Hall MS, RN, NEA-BC   In episode 146 of Hospice Explained, host Marie Betcher RN interviews Meg Johnson Hall, a nurse with over 40 years of experience. In this second part of their conversation, Meg shares her profound personal and professional experiences in hospice care, including lessons in being a strong patient advocate and handling the emotional and psychological complexities of patients nearing the end of life. The episode also delves into heartwarming stories that illuminate the deep connections formed with patients and families during their most vulnerable times. Additionally, Meg offers valuable advice for hospice professionals and families, highlighting the importance of listening to patients' needs and advocating for their quality of life. The discussion concludes with Meg sharing details about her current work in healthcare coaching and holistic healing.  00:00 Introduction and Disclaimer 00:29 Meet Your Host: Marie Betcher 00:46 Interview with Meg Johnson Hall: Part Two 01:08 Meg's Early Experience with Death 02:22 Advice for Hospice Nurses 04:30 Patient Advocacy and Family Dynamics 06:44 Humorous and Heartwarming Stories 12:35 A Patient's Final Wish 18:21 Meg's Current Work and Future Plans 21:35 Conclusion and Call to Action Reach out to MEG: https://firstqualityconsulting.com/   Hospice Explained Affiliates & Contact Information Buying from these Affilite links will help support this Podcast.  Maire introduces a partnership with Suzanne Mayer RN inventor of the  cloud9caresystem.com,  When patients remain in the same position for extended periods, they are at high risk of developing pressure injuries, commonly known as bedsores. One of the biggest challenges caregivers face is the tendency for pillows and repositioning inserts to easily dislodge during care.(Suzanne is a former guest on Episode #119) When you order with Cloud 9 care system, please tell them you heard about them from Hospice Explained.(Thank You)  If you would, you can donate to help support Hospice Explained at the Buy me a Coffee link  https://www.buymeacoffee.com/Hospice Marie's Contact Marie@HospiceExplained.com www.HospiceExplained.com Finding a Hospice Agency 1. You can use Medicare.gov to help find a hospice agency, 2. choose Find provider 3. Choose Hospice 4. then add your zip code This should be a list of Hospice Agencies local to you or your loved one.    

Katie and Allie's story began in childhood with unexplained clumsiness and subtle symptoms that intensified over time. After years of searching for answers, Katie was diagnosed with late-onset Tay-Sachs (LOTS), a rare neurodegenerative disease. Further testing confirmed her twin sister Allie's diagnosis as well. Despite facing daily challenges ranging from mobility issues to emotional strain, the sisters have become passionate advocates, raising over $1 million for research and awareness. With humor, grit, and the support of their family—especially their powerhouse mom—they continue to live fully and inspire the rare disease community. In this moving episode of On Rare, David Rintell, Head of Patient Advocacy at BridgeBio, and Mandy Rohrig, Senior Director of Patient Advocacy at BridgeBio Gene Therapy, speak with Katie and Allie, who share their experience with late-onset Tay-Sachs. The episode explores how Tay-Sachs, typically diagnosed in childhood, can present in adulthood, the emotional toll of navigating a progressive rare disease, and the resilience of a close-knit sibling duo who've turned advocacy into action.   Diana Jussila, Director of Family Services at the National Tay-Sachs & Allied Diseases Association (NTSAD), provides essential insights into late-onset Tay-Sachs disease, a rare, progressive, neurodegenerative condition caused by mutations in the HEXA gene leading to deficiency of the Hex A enzyme. Without this enzyme, toxic substances accumulate in the brain and spinal cord, resulting in symptoms like muscle weakness, balance issues, speech difficulties, and psychiatric challenges. With no approved treatments and only supportive care available, community connection, advocacy, and ongoing research are vital lifelines for those living with late-onset Tay-Sachs disease.

What happens when a black belt, sword-slinging fitness icon gets cancer—twice? She picks up a camera and dares the universe to test her again.Ilaria Montagnani is not your average anything. She's been building strong bodies (and stronger minds) for over 30 years as the founder of Powerstrike. She's part Jane Fonda, part Uma Thurman, and very much the action hero you wish was your personal trainer.In this episode, we talk about what happens when everything you built your life on—movement, strength, purpose—gets sideswiped by disease. Twice. Ilaria opens up about diagnosis shock, bad doctor vibes, wielding swords post-mastectomy, and why working out through treatment is the best revenge.We get into scanxiety, menopause side effects, nutrition spirals, and the moment she realized the fitness industry needed more truth—and less bullshit.This one's real, raw, and will either guilt you into planking or inspire you to finally cancel that gym membership you've never used. Either way, you're gonna feel something.RELATED LINKSStronger for Life documentaryPowerstrike official siteIlaria on InstagramIlaria on LinkedInWorkout programs and DVDsForza Sword Workout on AmazonFEEDBACKLike this episode? Rate and review Out of Patients on your favorite podcast platform. For guest suggestions or sponsorship inquiries, email podcast@matthewzachary.comSee Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

The Radically Genuine podcast welcomes back renowned Maternal-Fetal Medicine (MFM) physician Dr. Adam Urato as he pulls back the curtain on what pregnant women aren't being told about medication risks. Why are doctors spending less than ten minutes on "informed consent" when your child's future is at stake? What caused one medical intervention to be injected into 350,000 pregnant women despite not actually working? Dr. Urato reveals why corporate medicine makes it nearly impossible for physicians to tell patients the truth and explains his bold mission to change FDA labeling. This conversation will force you to question everything you thought you knew about "safe" medications during pregnancy.Chapters00:00 The Vulnerability of Unborn Children02:30 Introduction of Dr. Adam Urato04:08 The Case of McKenna: A Systemic Failure11:17 The Need for Rigorous Safety Evaluations16:33 Chronic Disease Epidemic and Chemical Exposures23:16 Mental Health and Pregnancy: A Complex Debate39:14 Fear Provocation and Informed Consent43:20 Informed Consent and Patient Empowerment46:36 The Challenges of Time in Medical Practice53:09 Risks and Benefits of Psychiatric Medications01:01:05 The Role of Physicians in Patient Advocacy01:06:04 Citizen's Petition and FDA Labeling Changes01:18:00 The Importance of Open Dialogue in Medicine RADICALLY GENUINE PODCASTDr. Roger McFillin / Radically Genuine WebsiteYouTube @RadicallyGenuineDr. Roger McFillin (@DrMcFillin) / XSubstack | Radically Genuine | Dr. Roger McFillinInstagram @radicallygenuineContact Radically GenuineConscious Clinician CollectivePLEASE SUPPORT OUR PARTNERS15% Off Pure Spectrum CBD (Code: RadicallyGenuine)10% off Lovetuner click here—-----------FREE DOWNLOAD! DISTRESS TOLERANCE SKILLS

Helene M. Epstein is not here to make friends with the healthcare system. She's here to dismantle the bullshit, one catastrophic medical error at a time. A marketing agency veteran turned patient safety firebrand, Helene's journey from copywriter to cancer misdiagnosis survivor, to “badass queen of patient safety,” is one hell of a ride.We talk about how her son was misdiagnosed over 15 times (yes, really), why some doctors should come with warning labels, and how American healthcare gaslights patients like it's a competitive sport. She also explains why she's giving away her new book for free, one chapter at a time, and how AI might actually be useful—if it stops hallucinating citations.This is not a light listen. It's the real deal. You'll walk away angry, inspired, and a lot more dangerous as a patient.RELATED LINKSHelene's Substack: https://helenemepstein.substack.comPatient Safety Resources: https://www.pfps.usSociety to Improve Diagnosis in Medicine: https://psnet.ahrq.gov/issue/society-improve-diagnosis-medicineHelene's Website: https://www.hmepstein.com/meet-heleneLinkedIn: https://www.linkedin.com/in/hmepsteinFEEDBACKLike this episode? Rate and review Out of Patients on your favorite podcast platform.For guest suggestions or sponsorship inquiries, email podcast@matthewzachary.comSee Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

In this episode of Nurse Converse, Shenell Thompkins is joined by Tiffany Cannon, who shares her powerful story of living with a Left Ventricular Assist Device (LVAD). At just 28, Tiffany experienced heart failure during pregnancy, leading to an emergency C-section and the life-changing decision to receive an LVAD. She opens up about the emotional toll, her return to nursing, and how her dual perspective as both a patient and nurse fuels her passion for advocacy, empathy, and patient empowerment. Tiffany's journey is one of resilience and hope, proving that heart disease is not the end—but a new beginning. >>One Nurse's Journey with LVAD (Left Ventricular Assistive Device)Jump Ahead to Listen: [02:17] Tiffany's journey to heart failure.[05:53] Heart failure diagnosis after childbirth.[09:23] Divine intervention in medical decisions.[13:25] Gratitude through life changes.[21:00] Bridging patient-nurse connection.[22:49] Advocacy and patient awareness.[26:18] Heart disease is not a death sentence.[29:09] Supporting nurses in their careers.Connect with Shenell on social media:Instagram: allonenurse_shenell  TikTok: all_one_nurseFor more information, full transcript and videos visit Nurse.org/podcastJoin our newsletter at nurse.org/joinInstagram: @nurse_orgTikTok: @nurse.orgFacebook: @nurse.orgYouTube: Nurse.org

How far would you go to ensure your loved one had the best medical care possible? Ellen Elam drove her sister Cindy across Texas, headed west to New Mexico, up north to Oklahoma, and eastward to Florida. It started when she was unhappy with the care Cindy received in Dallas. What happened afterward involved a metastatic breast cancer diagnosis in Houston, and a fight for her sister’s life. During this conversation, Ellen shares her family’s story. And you’ll also hear why Ellen's dream is that everyone facing any kind of disease has a patient navigator, someone to stand beside them, support them, and get them through by doing whatever is needed, whenever it's needed, and however it's needed. Key Questions Answered 1. Why is patient navigation crucial in helping individuals navigate the complex healthcare system? 2. How can advocacy and support from caregivers and loved ones play a significant role in a patient's journey? 3. Why is asking questions, seeking help, and not being afraid to challenge doctors and explore different options essential in finding the best care? 4. How are funding and support for nonprofits necessary to provide resources and assistance to patients in need? Timestamped Overview 00:00 Introduction and Importance of Patient Navigation 01:12 Ellen's Background in Small Business 06:23 Ellen's Sister's Breast Cancer Diagnosis 09:45 Ellen's Advocacy for Her Sister 12:34 The Importance of Asking Questions and Seeking Help 18:42 The Role of Support Systems in Patient Advocacy 21:49 Ellen's Dream of Expanding Patient Navigation 27:48 Ellen's Vision with Unlimited Resources 30:39 The Need for Funding and Support for Nonprofits 32:06 Advice for Caregivers Support The Rose HERE. Subscribe to Let’s Talk About Your Breasts on Apple Podcasts, Spotify, iHeart, and wherever you get your podcasts.See omnystudio.com/listener for privacy information.

In this episode of The Patient From Hell, host Samira Daswani speaks with oncology nurse Joshua Carter about his path into cancer care, shaped by personal experiences with family illness. They explore the differences between palliative and hospice care, the complexities of pain management, and the vital role nurses play as advocates. Josh also discusses misconceptions around pain medication, the promise and challenges of e-health tools, and the often-invisible workflows nurses navigate daily. He shares practical advice for patients, caregivers, and fellow clinicians, emphasizing the importance of early palliative care and being a bold advocate within the healthcare system.About Our GuestJosh Carter is an Oncology Nurse at Stanford Women's Cancer Center. His entire 17-year nursing career has been in oncology, with inpatient, industry, and outpatient experiences in Cleveland, Chicago, San Diego, and San Francisco. Josh holds undergraduate degrees from Kent State University and Ohio University and is currently on track to complete his Master's at the University of Michigan School of Nursing this Fall. He is a certified Oncology and Breast Care Nurse. His interests include Nursing Innovation, Digital Health, Patient Advocacy, Patient Education, Patient-Centered Design, Healthcare Improvement, Quality, and Implementation Science. With his interests in Healthcare Quality, Josh is currently a Site Assessor for the Michigan Oncology Quality Consortium. Josh has spoken at the National Oncology Nursing Society Congress and Authored Chapters of Oncology Nursing Society Text Books. Josh has been involved with research for caregivers of Cancer patients and has helped in the launch of newly approved cancer treatments. Josh has experience working on a cancer care delivery team at ASCO and has been awarded the DAISY Award for Extraordinary Nurses. Resources & Links:This episode was supported by the Patient Centered Outcomes Research Institute (PCORI) and features the PCORI study “A Stepped-Wedge Randomized Controlled Trial: Effects of eHealth Interventions for Pain Control Among Adults With Cancer in Hospice”Sections00:00 - Journey into Oncology Nursing03:22 - Understanding Palliative vs. Hospice Care07:04 - Pain Management in Cancer Care10:23 - Pain Management Strategies and Misconceptions20:32 - E-Health Interventions in Pain Management23:19 - The Complex Workflow of Oncology Nursing27:48 - Quick Tips for Patients and CaregiversConnect with Us:Enjoyed this episode? Make sure to subscribe, rate, and review! Follow us on instagram, facebook, or linkedin @mantacares and visit our website at mantacares.com for more episodes and updates.Listen Across Platform:Website: https://mantacares.com/pages/podcast?srsltid=AfmBOopEP5GJ-Wd2nL-HYAInrwerIVhyJw67salKT-r9Qb_gadBvbHie YouTube: https://www.youtube.com/@mantacares Spotify:  https://open.spotify.com/show/6gM1GxDBUgXrHwlO0Zvnzs?si=9edb8680461d4eaa Apple: https://podcasts.apple.com/us/podcast/patient-from-hell/id1622669098 Disclaimer:All content and information provided in connection with Manta Cares is solely intended for informational and educational purposes only. This content and information is not intended to be a substitute for medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.This episode was supported by an award from the Patient-Centered Outcomes Research Institute.

Jonathan and Jennifer Wall didn't choose this path, but they're walking it with purpose. After losing their son, Zach, they turned their grief into action, founding Zach's Bridge, a lifeline for families navigating pediatric cancer. This episode isn't about platitudes or silver linings—it's about the raw, unfiltered reality of love and loss, the relentless unfairness of childhood cancer, and how the Walls are refusing to let their son's memory fade into the void.Jon and Jenn open up about what Zach taught them, how they've reshaped their lives in his honor, and why “Be Like Zach” isn't just a phrase—it's a call to action. We talk about the power of community, the frustrating gaps in pediatric cancer care, and how they're making sure no other family has to walk this road alone. If you've ever wondered what real resilience looks like, this is it.RELATED LINKS:Zach's BridgeZach's Rules for LifeBe Like Zach - SubstackJonathan Wall on LinkedInJon's Post: What Cancer Taught Me About WorkRett's Roost Blog - Jonathan's WritingZach's Story - OSIFEEDBACK:Like this episode? Rate and review Out of Patients on your favorite podcast platform. For guest suggestions or sponsorship inquiries, email podcast@matthewzachary.com.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

A conversation with Rosie BartelNurturing the patient-physician partnership is the only way to heal healthcare.Sharing her lived experience with openness and honesty is Rosie Bartel, a patient advocate and survivor of preventable medical error. Since contracting MRSA after a routine knee replacement surgery, Rosie has channelled a hugely difficult and prolonged healthcare experience into a mission for systemic change.As she states, patient safety is a bipartisan issue, and we must ensure continued collaboration and communication between physicians, policymakers, executives and most importantly, patients themselves.——We spoke about Rosie's journey, why she believes patient advocacy is so important, the importance of breaking down silos that prevent communication, how patients can become their own advocates, and her solutions for developing relationships in healthcare that are rooted in trust.Follow me on Instagram and Facebook @ericfethkemd and checkout my website at www.EricFethkeMD.com. My brand new book, The Privilege of Caring, is out now on Amazon! https://www.amazon.com/dp/B0CP6H6QN4

Navigating the healthcare system as a woman, especially as a Black woman, can feel like a battle. A battle to be heard, believed, and treated with the care and respect we deserve. In this affirming and eye-opening episode of Be Well, Sis, I'm joined by Dr. Bayo, a physician and patient advocate who's using her voice to challenge bias in medicine and close the gap on maternal health disparities and healthcare inequities.Together, we dive into what it really takes to build trust in healthcare- not just between patient and provider, but within ourselves as we learn to speak up, ask questions, and challenge the harmful systems we've been taught to accept.Dr. Bayo shares her own journey into medicine and advocacy, including the influence of family, personal experience, and generational knowledge that shaped her commitment to making healthcare safer and more human.We explore the power of self-advocacy, the necessity of community, and why curiosity is one of the most powerful tools we can bring into any medical setting. This episode is for you if:You've ever felt dismissed or gaslit in a medical settingYou're curious about how to become a stronger advocate for yourself or your familyYou're a provider seeking to understand and confront your own biasesYou believe in the power of community-based healing and generational wisdomYou're ready to reclaim agency over your body, your choices, and your careWhether you're a patient trying to make sense of conflicting medical advice, a new mom seeking support, or a provider looking to serve with more empathy and equity—this conversation is your reminder that you deserve to be seen, heard, and cared for.Mentioned in this episode:Why Black patients don't trust the healthcare system | Bayo Curry-Winchell | TEDxRenoDo No Harm | Dr. Bayo Curry-Winchell | TEDxRutgersAbout Dr. Bayo: Dr. Bayo is a physician and passionate advocate for health equity, especially within maternal health. Her work centers around patient empowerment, provider accountability, and breaking cycles of harm in medicine. She believes in treating the whole person—body, mind, and spirit—with intention, respect, and curiosity.

Sarah Armstrong—forever Sarah Oakden to me, no matter what the legal documents say—isn't just my best friend. She's my first college friend, my musical theater soulmate, and the first person who truly saw me as an artist. She was there when I walked onto Binghamton's campus, and she was there when I walked into cancer hell. And, because we're nothing if not in sync, a few decades later, she got her own cancer badge of honor, and I was right there with her every step of the way.This episode is a love letter to friendship, music, and those moments that change your life forever. We nerd out over Sondheim, Binghamton's infamous "Theater 101 with Dr. Susan Peters." and the weird and wonderful rabbit holes that turn into entire alternate realities across decades of aging gracefully and falling with style.We talk about how cancer is the worst club with the best people and how surviving it together just adds another verse to the song we've been singing for 30 years. It's funny. It's real. It's a master class in love, laughter, and musicals that should have been bigger; with a big tip of the hat to Nancy Ford and Gretchen Cryer for their acclaimed musical "I'm Getting My Act Together and Taking It on the Road"Oh, and RIP to the legendary Denny's on Vestal Parkway. You will be missed.FEEDBACK:Like this episode? Rate and review Out of Patients on your favorite podcast platform. For guest suggestions or sponsorship inquiries, email podcast@matthewzachary.com.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

Imagine having a dedicated nurse advocate by your side, ensuring you receive the best possible care wherever you call home. In this episode, Jeannemarie Bozza discusses founding Commodore Concierge Nurse Management, a unique home nursing company focused on personalized, holistic care that empowers nurses and prioritizes preventative medicine. Her passion for exceptional care led to a rapidly growing referral-based business that aims to improve patient quality of life and elevate home healthcare as an alternative to traditional settings. Tune in as Jeannie Bozza shares how her innovative approach is transforming patient care and redefining home nursing! Watch the entire episode on YouTube and get more details at Think Oral Health. Resources: Connect with and follow Jeannemarie Bozza on LinkedIn. Visit the Commodore Concierge Nurse Management website! Watch the entire episode on YouTube and get more details at Think Oral Health. Mariya Filipova - https://filipova.health/ Systemic Health Investor - https://www.4100dx.com/ Care Convergence Thought Leader: Dental Economics Forbes Technology Council Member Jonathan Levine - www.drjonathanlevine.com Founder - JBL New York City www.jblnyc.com Founder - GLO Science LLC www.gloscience.com Co-Founder - GLO GOOD Foundation www.glogoodfoundation.org

Dr. Hoffman continues his conversation with Dr. Julie Siemers, a nurse educator and author of “Surviving Your Hospital Stay: A Nurse Educator's Guide to Staying Safe and Living to Tell About It.” 

Dr. Julie Siemers, a nurse educator and author of “Surviving Your Hospital Stay: A Nurse Educator's Guide to Staying Safe and Living to Tell About It,” details the importance of patient safety in hospitals, the dangers of medical errors, and how patients and their families can advocate for better care. Dr. Siemers talks about the critical role of nurses, the hierarchy within the nursing profession, and the importance of effective communication between healthcare providers and patients. She also offers practical advice on dealing with high-risk medications, leveraging AI in healthcare, and ensuring better health outcomes by being informed and proactive.

Food for Thought: Cancer, Calories, and Kicking AssVanessa Rissetto is back, and she's bringing the same energy, wit, and unapologetic realness that made her a fan favorite. Last time, we talked nutrition and the rise of Culina Health. This time, life threw her a plot twist—breast cancer. Because, you know, irony.Vanessa was busy building a nutrition empire when she got diagnosed. So, naturally, she texted, “WTF do I do now?” to her closest cancer Sherpas—yours truly included. Spoiler alert: She powered through, beat cancer, and kept scaling Culina Health to new heights.We get into it all—being a cancer patient when you're supposed to be the health expert, the emotional whiplash of survivorship, the absolute clown show that is American food regulation, and why European Oreos are apparently less cancerous than ours. Also, parenting, loneliness, and why the healthcare system still makes zero sense.Get ready for a wild ride of truth bombs, wisdom, and laughter with one of the sharpest voices in nutrition and entrepreneurship.RELATED LINKSVanessa on LinkedInCulina HealthVanessa's WebsiteVanessa's Story on HLTHVanessa on Breast Cancer - TODAYWhat Vanessa Learned About Food After CancerDaily Mail: Vanessa on an Unexpected SymptomSurvivorNet: Vanessa on Nutrition and CancerFEEDBACKLike this episode? Rate and review Out of Patients on your favorite podcast platform. For guest suggestions or sponsorship inquiries, email podcast@matthewzachary.com.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

Ever feel lost in the maze of healthcare? As part of Podcasthon, Talaya Dendy sits down with Sandra Washington in this powerful and special episode. Sandra is the driving force behind C.H.L.M.S. Medi-Helpz, and she shares her incredible journey as a patient, revealing the raw, personal inspiration that sparked her mission to bridge the healthcare gap for underserved communities. Discover how C.H.L.M.S. Medi-Helpz is transforming lives through patient advocacy and vital healthcare literacy resources. Don't just navigate healthcare; conquer it with the tools and insights you'll gain in this must-listen episode.

EPISODE DESCRIPTIONLillian Kreppel doesn't hold back. A seven-year anal cancer survivor and co-founder of the HPV Cancers Alliance, she has made it her mission to challenge stigma, fight misinformation, and push for better awareness of HPV-related cancers. In this episode, she sits down with Matthew Zachary to talk about her journey from high-powered sales to full-time advocacy, the absurd misconceptions surrounding HPV, and why more doctors should be doing rectal exams—but aren't. With her signature humor and relentless drive, Lillian shares how she turned her diagnosis into a movement, what it takes to make people uncomfortable for the right reasons, and why she refuses to stop talking about the HPV vaccine. It's an eye-opening, unfiltered, and surprisingly hilarious conversation about a serious issue too many people ignore.RELATED LINKSHPV Cancers Alliance: https://hpvca.org/Lillian's Story (MSKCC): https://www.mskcc.org/experience/hear-from-patients/lillianInterview on HPVWorld: https://www.hpvworld.com/articles/anal-cancer-and-hpv-a-history-of-awareness-and-stigma-interview-with-lillian-kreppel/Speaking With Lillian Kreppel (Ask About HPV): https://www.askabouthpv.org/stories/speaking-with-lillian-kreppel-co-founder-of-the-hpv-cancers-allianceEuropean Cancer Organization Feature: https://www.europeancancer.org/content/lillian-kreppel.htmlAnal Cancer Survivor Feature (Patient Resource):https://www.patientresource.com/Anal_Cancer_Survivor_Lillian_KreppelFEEDBACKLike this episode? Rate and review Out of Patients on your favorite podcast platform. For guest suggestions or sponsorship inquiries, email podcast@matthewzachary.com.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

Grace Charrier—a powerhouse advocate, author, and cancer survivor—whose journey from a Stage 3 triple-negative breast cancer diagnosis to global advocacy is nothing short of extraordinary. Originally from Nigeria, Grace's life was upended when she was diagnosed following an unexpected health scare. Instead of retreating, she turned her experience into action, launching Cancer Convos with Grace B, writing the memoir IMPOSSICANT!, and becoming a voice for patients navigating the complexities of cancer care worldwide.Matthew and Grace dive into the realities of living with cancer, from the absurdities of the U.S. healthcare system to the deeply ingrained stigmas surrounding the disease in Africa. They explore the critical role of doctor empathy, the perils of consulting “Dr. Google,” and the relentless frustration of dealing with insurance providers. The conversation is raw, unfiltered, and filled with humor, as they trade stories about survivorship, advocacy, and the power of storytelling in making sense of the chaos.This episode delivers a mix of inspiration, honesty, and irreverence—showcasing Grace's unwavering determination to change the cancer narrative, one conversation at a time.RELATED LINKS:Grace Charrier on LinkedInCancer Convos with Grace B on YouTubeGrace's Memoir: IMPOSSICANT! on AmazonBlue Note TherapeuticsRare Patient VoiceImerman AngelsAmerican Cancer Society Cancer Action NetworkRed Door CommunityHealth UnionAdvocates for Collaborative EducationFEEDBACK:Like this episode? Rate and review Out of Patients on your favorite podcast platform. For guest suggestions or sponsorship inquiries, email podcast@matthewzachary.com.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

Buckle up, because Amy Gittelman is back, and this episode is one for the ages. A fellow SUNY Binghamton (yes, we still call it that) alum, Amy joins me for a hilarious and brutally honest deep dive into the absurdities of healthcare, insurance fuckery, and the general nonsense that plagues the system. From dodging medical debt landmines to battling insurance companies that seem hellbent on denying care, we go all in.But wait—there's more! We reminisce about our Binghamton days, debate the superiority of Wegmans over every downstate grocery store, and expose the dark art of healthcare billing fraud (spoiler: it's as bad as you think). Amy, a seasoned healthcare badass, drops wisdom bombs on why the industry is broken, what we can do about it, and why she's basically a mix of Miranda Priestly, Leslie Knope, and Dolly freakin' Parton.If you've ever yelled at your insurance company, fought a medical bill, or just wanted to flip a table over the state of American healthcare, this episode is for you.RELATED LINKS:Amy Gittelman on LinkedInAmy's Odyssey Feature on PM360Amy's Profile on OncoDailyVeradigm Healthcare SolutionsFEEDBACK:Like this episode? Rate and review Out of Patients on your favorite podcast platform. For guest suggestions or sponsorship inquiries, email podcast@matthewzachary.com.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.