Podcasts about rare diseases

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 LinkedInHumanity Rx PodcastFEEDBACKLike 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.

HEADLINES:• Sheikh Hamdan Just Fexed His Official Etihad Rail Ticket On Snapchat! • The UAE Is Rallying Behind A Young Boy In His Fight Against A Rare Disease • A UAE Employer Surprised Their Staff With New iPhones! • Dubai Police Arrest Organised Begging Gang Targeting Drivers

Rare disease connects more people than many of us realize.  While every diagnosis is unique, the journey often includes many of the same challenges: searching for answers, navigating the healthcare system, advocating for better care, managing complex treatments, and finding hope along the way. Cystic fibrosis is considered a rare disease because it affects fewer than 200,000 people in the United States, just like mitochondrial disease. Although these conditions are different, the experiences of patients and families often have much in common. Our guest is Michael Goldberg, a rare disease patient, advocate, entrepreneur, and author. Michael and I connected on LinkedIn, and I'm so glad he reached out because his story is one that will resonate with anyone whose life has been touched by a rare disease. Michael lives with a rare mitochondrial disease and has turned his personal experiences into a mission to help others. He's the Founder and CEO of 12 Brand | MediXo, a patient-led health technology initiative focused on medication adherence, dosing accuracy, and preventive health. He also helps fund research and community programs. Right by his side is his wife Judi. We talk with her about the challenges about being a caregiver, and how that can change a marriage. They're beautiful marriage and upbeat, positive attitude will inspire you. Michael is also the author of I'll Have Mine Rare and I'll Have Mine Rare: Growing Up Different. In this episode, we talk about advocacy, caregiving, resilience, and why the rare disease community is stronger when we learn from one another. Whether your family is affected by cystic fibrosis or another rare disease, I think you'll find inspiration and encouragement in Michael's journey. To get in touch with Michael Goldberg:  info@medixo.health Like, subscribe, and comment on our podcasts!Please consider making a donation: https://thebonnellfoundation.org/donate/The Bonnell Foundation website:https://thebonnellfoundation.orgEmail us at: thebonnellfoundation@gmail.com Watch our podcasts on YouTube: https://www.youtube.com/@laurabonnell1136/featuredNew: Shop our merchandise! https://thebonnellfoundation.org/product-shop/Thanks to our sponsors:Vertex: https://www.vrtx.comViatris: https://www.viatris.com/enRead us on Substack: https://substack.com/@lstb?utm_campaign=profile&utm_medium=profile-pageWatch our trailer of Embracing Egypt: https://youtu.be/RYjlB25Cr9Y

As many of our listeners know from news reports, emergency departments have been under enormous strain in recent years trying to manage overcrowding, the opioid addiction crisis, the consequences of an under-resourced mental health system, and rising rates of violence against staff, among many other challenges. But our guest today guest thinks there's something else that should top that list. "I think hands down the most important issue is the reimbursement model," says Dr. Ryan Stanton, president-elect of the American College of Emergency Physicians. Dr. Stanton's uniquely-informed view is built on his work leading a physician-owned group staffing two Kentucky emergency departments, serving as EMS medical director for Lexington-Fayette County, and overseeing on-track medical response crews for auto racing series such as NASCAR. In this candid conversation with Raise the Line from Elsevier host Lindsey Smith, Dr. Stanton traces how underpayment from insurers is squeezing physicians and warping the incentives of emergency care, and why he believes the profession's ability to advocate collectively, not individually, is what will move the needle. This informative episode also explores: Why he thinks physician autonomy is the antidote to burnout; His approach to communicating medical information as a TV commentator; What it's like providing care at a NASCAR race when the “car is still smoking.” Mentioned in this episode: American College of Emergency Physicians If you like this podcast, please share it on your social channels. You can also subscribe to the series and check out all of our episodes at www.osmosis.org/podcast

Welcome to Episode 095 of the Beyond the Diagnosis Podcast. Artificial intelligence is changing the way we find, understand, and use medical information—but what does that mean for people living with rare disease? In this episode, Kathy talks with Dr. Michael Henry about the role AI can play in the rare disease journey, from helping patients make sense of complex information and prepare for conversations with their healthcare providers to navigating the uncertainty of a diagnostic odyssey. They also explore an important question: How do we use AI without allowing it to replace the expertise, experience, and relationship at the heart of good medical care? This isn't about blindly trusting AI—or dismissing it. It's about learning how to question, verify, and use this rapidly evolving technology thoughtfully as another tool in the rare disease toolbox. Let us know what you think! Leave us a review, drop us a comment or share an idea for a future podcast with us at podcast@histio.org.   Take a screenshot and tag us @histiocytosis_association on Instagram. We'd love to hear your feedback!  Be sure to subscribe so you can be notified the moment a new episode of Beyond the Diagnosis is released.  Resources mentioned in the podcast: Get more info on Histiocytosis Awareness Month: www.histio.org/getinvolved/raiseawareness Get involved in our Blue Ribbon Run! www.histio.org/blueribbonrun Follow the Histiocytosis Association on social media: Facebook: https://www.facebook.com/histio Twitter: @histiocytosis Instagram: histiocytosis_association YouTube: https://www.youtube.com/@Histiocytosis  Music: “Heroes” by Noah Smith 

Send us Fan MailImagine being exhausted all the time, dealing with an itch that can become unbearable, and worrying about progressive liver damage - yet having everyone around you tell you that you look perfectly healthy. That's the reality for many people living with Primary Biliary Cholangitis, or PBC. But here's the fascinating question: if PBC is fundamentally an autoimmune disease, can we eventually do more than treat the consequences - can we actually teach the immune system to stop attacking the liver?Primary Biliary Cholangitis, or PBC, is a rare, chronic autoimmune disease that damages the small bile ducts within the liver and can ultimately lead to progressive liver damage.Carol Roberts is President of The PBCers Organization ( https://pbcers.org/ ), the patient-led organization that has spent three decades supporting people living with PBC, their families and care partners, while working to increase awareness, reduce stigma and advance the patient voice in research and treatment.Carol has been involved with PBCers for more than two decades and has become one of the organization's leading voices for the PBC community. She brings not only years of patient advocacy experience, but also her own lived experience with PBC.We're speaking with Carol during PBC Awareness Month following the release of the organization's new Voice of PBC national survey, which captured the experiences of 210 people living with the disease.The findings provide a remarkable window into the reality of PBC - from debilitating fatigue and itching to anxiety about disease progression, financial strain, and the stigma that can come from having an illness that often isn't visible to other people.We'll talk about what PBC actually is, why it is so often discovered through routine bloodwork, why fatigue and pruritus can be so devastating, what has changed in the treatment landscape, and what patients still need from researchers, physicians and the broader healthcare system.And perhaps most importantly, we'll talk about what it means to live with a disease that you often can't see - but that can profoundly shape virtually every aspect of a person's life.#PrimaryBiliaryCholangitis #PBC #PBCAwareness #AutoimmuneDisease #LiverDisease #RareDisease #WomensHealth #LiverHealth #Autoimmunity #Immunology #DrugDevelopment #Biotech #Biopharma #MedicalResearch #PatientAdvocacy #ChronicDisease #HealthcareInnovation #FutureOfMedicine #PBCers #ProgressPotentialAndPossibilitiesSupport the show

Fitz Koehler is a fitness expert, race announcer, author, and breast cancer survivor whose career spans decades of helping people move, train, and live healthier lives. After earning a master's degree in exercise and sport sciences, she built the Fitzness brand, launched the Morning Mile school fitness program, and became one of the country's most recognizable voices at endurance events before cancer abruptly shifted the conversation. She spent 15 months enduring chemotherapy, surgery, and radiation after discovering breast cancer shortly after receiving a clean mammogram. She kept traveling, announcing races, and working through treatment while watching the body she had spent a lifetime building become weaker by the week. Instead of asking why cancer happened, she focused on the only things she believed remained under her control: movement, nutrition, sleep, and mental health. The conversation explores where personal agency ends and biology takes over. Koehler argues that exercise is not about chasing perfection or preventing every diagnosis. It is about building physical reserve before illness arrives and preserving strength, mobility, and independence during treatment. She rejects wellness snake oil, fad supplements, and miracle cures in favor of practical habits rooted in exercise science and lived experience. The discussion also confronts a harder truth. Koehler did everything “right” and still developed cancer. That tension becomes the center of the episode. Fitness cannot eliminate randomness, but it can influence how people experience treatment, recover from surgery, and reclaim their lives afterward. The conversation moves beyond motivation and into survivorship, exercise oncology, cancer rehabilitation, evidence-based nutrition, and the limits of individual control inside a healthcare system that often tells patients what they should do without showing them how to do it. Along the way, the conversation wanders through kickboxing, Cinnabon, Jean-Claude Van Damme, chocolate-covered Cheetos, Jerry Seinfeld playing during chemotherapy stretches, and why the simplest advice is often the hardest to follow. Beneath the humor sits a larger argument: preparing the body for hardship is not about living forever. It is about living better when life inevitably gets difficult. RELATED LINKSFitz Koehler⁠Fitzness⁠The Morning Mile⁠You. Supercharged!⁠My Noisy Cancer Comeback⁠Your Healthy Cancer Comeback⁠UF Health Cancer Center⁠American College of Sports Medicine Exercise Is Medicine⁠FEEDBACKLike 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.

When Kendra Riley‘s daughters were diagnosed with fatal metachromatic leukodystrophy, her family was forced to raise $500,000 and relocate to Italy – because the lifesaving treatment was not FDA approved. Today, Riley is fighting for Right to Try 2.0: congressional legislation designed to let people with ultra-rare diseases access cutting-edge individualized therapies without bureaucratic delays from the FDA. The Goldwater Institute says the bill would create a federal pathway for patients with rare and ultra-rare diseases to access gene-based therapies designed for one person alone, which cannot move through the FDA's clinical trial process in time to save a life. The original Right to Try was signed into federal law in 2018. Dr. Simone Gold joins Dr. Drew to examine Riley's story, connecting it to a broader pattern of federal overreach in medical freedom – especially its hindrance of early outpatient therapeutics during COVID-19. Food entrepreneur and small-business advocate Chef Andrew Gruel discusses his upcoming book and his reelection campaign for Huntington Beach City Council. Kendra Riley is an advocate for medical freedom and for Right to Try 2.0. Read more about her daughter's story at https://rileysroad.com Dr. Simone Gold is a board-certified emergency physician and a Stanford University-educated attorney. She founded America's Frontline Doctors and GoldCare, and is the author of “Selective Persecution: The Legalization of American Fascism.” Follow at https://x.com/DrSimoneGold Chef Andrew Gruel is a food entrepreneur and small-business advocate, and the CEO and founder of American Gravy Restaurant Group. He owns Calico Fish House, hosts “Cooking with Gruel” on Rumble, and is a Huntington Beach city councilor currently running for reelection. Follow at https://x.com/ChefGruel 「 SUPPORT OUR SPONSORS 」 • BIOPRO - BioPro+® is a natural formula of growth factors and peptides that support how you look, feel & perform. Learn more at ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠https://drdrew.com/biopro⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ • FATTY15 – The future of essential fatty acids is here! Strengthen your cells against age-related breakdown with Fatty15. Get 15% off a 90-day Starter Kit Subscription at ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠https://drdrew.com/fatty15⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ • PALEOVALLEY - "Paleovalley has a wide variety of extraordinary products that are both healthful and delicious,” says Dr. Drew. "I am a huge fan of this brand and know you'll love it too!” Get 15% off your first order at ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠https://drdrew.com/paleovalley⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ • THE WELLNESS COMPANY - Counteract harmful spike proteins with TWC's Signature Series Spike Support Formula containing nattokinase and selenium. Learn more about TWC's supplements at ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠https://twc.health/drew⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ 「 ABOUT THE SHOW 」 This show is for entertainment and/or informational purposes only, and is not a substitute for medical advice, diagnosis, or treatment. Executive Producers • Kaleb Nation - ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠https://kalebnation.com⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ • Susan Pinsky - ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠https://x.com/firstladyoflove⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ Content Producer • Emily Barsh - ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠https://x.com/emilytvproducer⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ Learn more about your ad choices. Visit megaphone.fm/adchoices

Our guest this week is Paul Orshan of Miami, FL who is a prominent bankruptcy attorney, an author, a recovering person (12 step- clean for more than 40 years), and the father of three, including a daughter with special needs who very sadly passed away in 2015.    Paul and his former wife were married for 17 years and are the proud parents of three children: Max, Emily and oldest child, Amanda, who was diagnosed with a rare genetic disease and very sadly passed away in 2015 at age 22.Paul is also the author of: Just Say Hello: The Ordinary Dates of My Sometimes Difficult and Sometimes Remarkable (but Always Interesting) Days (and Nights).  The idea for the book sprung from a voicemail message a friend left as a condolence, shortly after Amanda passed away.  That simple act of reaching out and just saying hello, "I'm thinking about you," has been transformative.  Paul is also very transparent about drug and alcohol issues he had in his 20s, the positive impact the 12-step program has had on his life and is super proud that he has been clean for more than 40 years.  It's an uplifting story about commitment to family, transparency, reslience and the power of simple messages, all on this episode of the SFN Dad to Dad Podcast. Show LinksPhone – (305) 215-3158Email – paulorshan@gmail.com LinkedIn - https://www.linkedin.com/in/orshan-p-a-9473391b/ Book: Just Say Hello - https://tinyurl.com/mryur334 Special thanks to all those who supported the SFN U.S. Tour, a month-long, 50-state, 60+ stop tour that took place from May 21 to June 21, 2026: to strengthen and grow the Special Fathers Network and distribute 1,000+ complimentary copies of our new book: Dads Raising Children With Special Needs & Disabilities: A Guide For 21st Century Dads. Special Fathers Network –SFN is a dad to dad mentoring program for fathers raising children with special needs. Many of the 900+ SFN Mentor Fathers, who are raising kids with special needs, have said: “I wish there was something like this when we first received our child's diagnosis. I felt so isolated.  There was no one within my family, at work, at church or within my friend group who understood or could relate to what I was going through.”SFN Mentor Fathers share their experiences with younger dads closer to the beginning of their journey raising a child with the same or similar special needs. The SFN Mentor Fathers do NOT offer legal or medical advice, that is what lawyers and doctors do. They simply share their experiences and how they have made the most of challenging situations.Check out the 21CD YouTube Channel with dozens of videos on topics relevant to dads raising children with special needs - https://www.youtube.com/channel/UCzDFCvQimWNEb158ll6Q4cA/videosPlease support the SFN. Click here to donate: https://21stcenturydads.org/donate/Special Fathers Network: https://21stcenturydads.org/  

Limiting the side effects of cancer treatments has been an animating force in the field of oncology for many years, and there's been progress to report on that front, but what if you could target cancer tumors without using radiation or chemotherapy and instead generate heat from inside the tumor to kill cells? That's the quest of our guest today, Dr. Hadiyah-Nicole Green, whose promising research using lasers and nanoparticles to eliminate tumors received Breakthrough Device Designation from the FDA earlier this year. “The laser beam that we're using is low power like a laser pointer, and without activation by the laser, the nanoparticles are harmless. Both are targeted just at the site of the tumor so because we don't use systemic delivery, we avoid all of the systemic side effects,” she explains.Dr. Green is also the founder and president of the Ora Lee Smith Cancer Research Foundation, named for an aunt who raised her and who died of cancer without pursuing curative treatment because of her fear of the side effects. Shortly after, her aunt's husband also died of cancer, opting for treatments that took a heavy toll on his body. “At 22 years old, I saw the horrors of cancer and the horrors of cancer treatment and just felt in my heart that there has to be something better than this,” she tells host Michael Carrese.On this fascinating episode of Raise the Line from Elsevier, we'll explore the science behind Dr. Green's approach, the challenges of raising the millions of dollars needed for human clinical trials, and rethinking the current funding landscape for cancer treatments.Mentioned in this episode:Ora Lee Smith Cancer Research Foundation If you like this podcast, please share it on your social channels. You can also subscribe to the series and check out all of our episodes at www.osmosis.org/podcast

In this episode, we talk about what newly diagnosed patients are going through, the challenges that can overwhelm even the most centered person, the potential isolation, and how hard it can be to find good information even when it's out there. We get into something we care a lot about: the gap between all the great medical research on acromegaly and the practical, everyday guidance patients many times need: how to exercise, how to eat, how to live. Risa shares about the grief of letting go of the athlete she used to be, and how mindfulness helped her find her way back to a fuller life. We focused on things like nutrition, exercise, mental health support, identity grief, learning how to switch your brain to the ‘Off” position with mindfulness, and all the help needed to rebuild a fuller life.

Join David Craig, Co-Founder, President, and CEO of Sarcomatrix Therapeutics, for a masterclass on disrupting the traditional pharmaceutical development playbook. Rare neuromuscular diseases have long been underserved—not due to a lack of scientific potential, but because legacy pharma cost structures fail to scale to small patient populations. Drawing on 30 years of drug development leadership at industry giants like Amgen, Gilead, and Portola, David shares how Sarcomatrix is testing a lean, hyper-disciplined operating model to translate university research into clinical-grade therapeutics without the typical overhead waste.

"It's really hard to justify a test that has any complications if there isn't any reasonable expectation of benefit," says Dr. Rita Redberg, who has spent her career trying to help fellow clinicians consider the actual value of routine screenings and diagnostic testing in asymptomatic patients. Dr. Redberg -- a cardiologist and professor of medicine at the University of California, San Francisco for more than three decades -- is one of the leading voices advocating for a “high-value care” approach, an uphill fight in a healthcare system that tends to reward action over restraint. Her highest profile effort was launching the instructive “Less is More” series in JAMA Internal Medicine when she served as its editor-in-chief for 14 years. On a related track, her research on the assessment of the safety and effectiveness of medical technology, specifically high-risk cardiovascular devices, has yielded a troubling picture. "We found only 1% of devices enter the market through the FDA's most rigorous approval process. The high-quality evidence to support benefit for these devices that I had assumed was present, wasn't actually there.” Join Raise the Line host Lindsey Smith for an eye-opening exploration of what Dr. Redberg considers to be the overlooked risks and false reassurance of common tests and procedures, and her efforts to put the “do no harm” principle of medicine at the forefront of everyday practice.Mentioned in this episode:UCSF School of MedicineJAMA Internal Medicine's Less is More Series If you like this podcast, please share it on your social channels. You can also subscribe to the series and check out all of our episodes at www.osmosis.org/podcast

Jeremy Heffner, MD, FACS is a board-certified trauma surgeon, former Chair of Surgery at Lima Memorial Health System, and cofounder of Surgery Unified, one of the largest physician-led communities in surgery. His perspective carries weight because he has spent decades inside operating rooms, hospital leadership, physician culture, and the growing collision between medicine and corporate healthcare. He grew up in a blue-collar Ohio family of firefighters, railroad workers, police officers, and tradespeople. Medicine represented something rare: a career that combined service, stability, and purpose. He pursued engineering, earned his medical degree, completed trauma surgery fellowship training at the University of Michigan, and entered a profession that taught physicians to sacrifice themselves for patients.Then the rules changed.This conversation traces the gap between the medicine physicians were trained to practice and the healthcare industry that emerged around them. Administrative burden expanded. Insurance companies gained influence over treatment decisions. Prior authorization became routine. Hospital systems consolidated. Physicians retained responsibility for outcomes while losing authority over the conditions required to achieve them.Heffner describes watching colleagues struggle with burnout, moral injury, PTSD, and growing frustration with a system that increasingly inserts business incentives between clinicians and patients. He explains why younger physicians are entering medicine with a level of visibility that previous generations never had. They see the paperwork, the denials, the loss of autonomy, and the personal cost before they ever finish training.The discussion moves beyond physician dissatisfaction and into the broader consequences for patients. When insurers delay care, hospitals absorb costs, clinicians absorb stress, and patients absorb uncertainty. The financial incentives remain intact while trust erodes across every level of the healthcare system.At its core, this episode examines what happens when a profession built around service finds itself operating inside an industry built around extraction. The result affects physicians, nurses, caregivers, and every patient forced to navigate the consequences.RELATED LINKSJeremy Heffner⁠Surgery Unified⁠SurgeOn⁠University of Michigan Department of Surgery⁠KevinMD⁠Suck It Up Buttercup⁠FEEDBACKLike 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.

Hello Brave Friends! Welcome to today's Story episode, #263. These are true stories from a moment in the life of a caregiving parent. We hear a crafted story, and then have a conversation with our guest that goes deeper into their experience.In this episode, Jessica Patay and Susanna Peace Lovell sit down with Nikki McIntosh, rare disease mom, advocate, author, and founder of Rare Mamas, to talk about her journey raising her son Miles, who has spinal muscular atrophy, or SMA.Nikki shares the early days of knowing something wasn't right, the persistence it took to push for answers, and how becoming an advocate for her son ultimately changed the direction of her own life. She opens up about the realities of caregiving, navigating school and community, and learning when to protect her time and energy by setting boundaries.Jessica, Susanna, and Nikki also talk about something caregiving moms often struggle to prioritize: themselves. Nikki shares how exhaustion and overwhelm led her to become more intentional about self-care, why she now considers it a non-negotiable, and what it looks like to prioritize peace while still carrying the responsibilities of caregiving.They also explore Nikki's journey to creating Rare Mamas and becoming an author, including how writing gave her a way to process her experiences, turn pain into purpose, and use her own story to support other families navigating rare disease.This conversation is a reminder that advocating fiercely for our children and caring for ourselves don't have to be opposing goals. Nikki encourages fellow caregiving moms to keep pushing for answers, protect their energy, use their gifts to serve others, and make room for joy and peace along the way.We see you, and we love you!Find more information about Nikki McIntosh here. Find Nikki's book, Rare Mamas here. Find more information about Life Coach, Susanna Peace Lovell here.Find Susanna's book, Your True Self is Enough here.Find our first book from We Are Brave Together, Becoming Brave Together here.Find our second book from We Are Brave Together, Suddenly Brave Together here. Find FULL episodes and clips of our podcast on Youtube here.Brave Together is the podcast for We are Brave Together, a not-for-profit organization based in the USA. The heart of We Are Brave Together is to strengthen, encourage, inspire and validate all moms of children with disabilities and other needs in their unique journeys. JOIN the international community of We Are Brave Together here. Donate to support all of We Are Brave Together's programs and offerings here. Can't get enough of the Brave Together Podcast? Follow us on Instagram , Facebook and Youtube. Feel free to contact Jessica Patay via email: jpatay@wearebravetogether.org If you have any topic requests or if you would like to share a story, leave us a message here.Please leave a review and rating today! We thank you in advance!Disclaimer

Friends for years and with CF as their connection, Laura and Petrina have figured out how to raise CF awareness across the world. How does cystic fibrosis care compare between Australia and the United States? Host Laura Bonnell talks with Petrina Fraccaro, CEO of CF Queensland, about her journey into CF advocacy, the mission of CF Queensland, and the support available to individuals and families living with cystic fibrosis. Laura and Petrina also discuss the global landscape of cystic fibrosis, including advocacy, carrier screening, and international collaboration. They share insights from worldwide conferences, highlight the importance of community support, and explore opportunities to improve access to care and medications for people living with CF around the globe. As cofounders of the CF Global Advocacy Alliance (CFGAA), the women talk about how organizations around the world are working together to create a brighter future for the CF community. A Personal Connection to Cystic Fibrosis Petrina's path to CF advocacy is an interesting one. With a background in public relations, education, and working to empower women, she eventually began looking for an opportunity in the not-for-profit world. She wanted to use her skills for something meaningful, particularly for a chronic illness that many people didn't understand. But CF wasn't completely unfamiliar to her. As a child, Petrina had watched a family friend live with cystic fibrosis. That early experience stayed with her and eventually helped lead her into a career advocating for people and families affected by CF. Today, that passion has grown into leadership at Cystic Fibrosis Queensland, where she works to make sure people living with CF and their families have the resources, support, and advocacy they need. Supporting Families Through Cystic Fibrosis Queensland Cystic Fibrosis Queensland provides support across Queensland and the Northern Territory, helping families navigate the financial, emotional, and practical challenges that come with CF. Petrina talked openly about the challenges the organization has faced, including financial sustainability. Rather than trying to do everything, she focused on listening to the CF community and identifying the services that were most important. Those services include: Medical subsidies to help families manage the costs associated with CF care. Specialty grants that can help provide equipment such as nebulizers and oxygen concentrators. Education scholarships that help people with CF pursue college, training, and career opportunities. Mental health support for people with CF, their families, and caregivers. What struck me throughout our conversation was how much of this work comes down to one simple idea: people should not have to navigate CF alone. Why Awareness and Education Still Matter It can be easy to look at the incredible advances in CF treatment and think that we have solved many of the problems associated with the disease. We haven't. While CF treatments have changed dramatically—and modulators have given many people with CF opportunities that previous generations never had—there are still people who are diagnosed late, people who don't have access to the newest treatments, and families who don't understand what CF means when it enters their lives. Petrina talked about the importance of reaching immigrant and multicultural communities in Australia, where cystic fibrosis may not be well understood or even recognized. That education extends beyond families. Healthcare professionals and the broader community also need to understand CF so that people can be diagnosed as early as possible and connected with appropriate care. The Importance of Carrier Screening One of the topics we discussed that I think deserves much more attention is genetic carrier screening. Cystic fibrosis is an inherited condition, and a person can be a healthy carrier without ever knowing it. In Australia, Cystic Fibrosis Australia estimates that approximately 1 in 25 people carry a CF gene change, and most carriers are unaware of their status. Research from Australia also demonstrates just how important broader carrier screening can be. In a study of 12,000 people undergoing reproductive carrier screening for CF, spinal muscular atrophy, and fragile X syndrome, 342 people were identified as CF carriers, about 1 in 34 people screened. Approximately 88% of the people identified as carriers had no known family history of the condition. That last statistic is especially important. You don't have to have a family history of cystic fibrosis to be a carrier. Australia took an important step in November 2023 when reproductive carrier screening for CF, spinal muscular atrophy, and fragile X syndrome was added to the Medicare Benefits Schedule for people who are pregnant or planning a pregnancy. Testing has increased significantly since then, although there is still a need for greater awareness and education about carrier screening. For me, this is another reminder that education can change lives. Knowing your carrier status can give people information they can use when making decisions about starting or growing their families. Mental Health Is Part of CF Care Another part of our conversation that really stood out to me was mental health. Living with CF is not just about medications, clinic appointments, hospitalizations, treatments, and lung function numbers. It can affect every part of a person's life, and it affects the entire family. Cystic Fibrosis Queensland has developed mental health programming that supports people with CF as well as their families and caregivers. Petrina also talked about mental health first-aid training, which can give people the tools to recognize when someone may be struggling and help connect them with appropriate support. We also talked about something that comes up frequently in advocacy: the power and responsibility of sharing your story. Personal stories can educate people, change hearts, raise money, and influence policy. But constantly telling your story can also be emotionally exhausting. That means we need to make sure the people sharing their experiences are supported, too. Advocacy Is About More Than Awareness One of my biggest takeaways from talking with Petrina is that advocacy isn't just about making people aware that cystic fibrosis exists. It's about changing systems. It's about making sure families can afford the care they need. It's about access to medications and equipment. It's about education. It's about mental health. It's about genetic screening. It's about making sure people in every community—including communities where CF may be less recognized—have access to knowledgeable healthcare. And it's about making sure that progress in CF doesn't leave people behind. Looking Toward the Future Petrina's journey is a great example of what can happen when someone combines professional skills with a personal passion for making a difference. Our conversation reminded me that the CF community has come incredibly far, but there is still so much work to do. The treatments may be changing. The life expectancy for people with CF is changing. The way we think about CF is changing. But the need for advocacy, education, support, and connection isn't going away. And that's why conversations like this matter. I'm grateful to Petrina—not only for the work she does every day for the CF community in Australia, but for the friendship we've built through our shared commitment to making life better for people and families living with cystic fibrosis. To learn more about CF Queensland, Australia https://www.cfqld.org.au For more about CF Global Advocacy Alliance https://cfgaa.org.au For more about the European CF Society and the conferences they hold https://www.ecfs.eu Like, subscribe, and comment on our podcasts!Please consider making a donation: https://thebonnellfoundation.org/donate/The Bonnell Foundation website:https://thebonnellfoundation.orgEmail us at: thebonnellfoundation@gmail.com Watch our podcasts on YouTube: https://www.youtube.com/@laurabonnell1136/featuredNew: Shop our merchandise! https://thebonnellfoundation.org/product-shop/Thanks to our sponsors:Vertex: https://www.vrtx.comViatris: https://www.viatris.com/enRead us on Substack: https://substack.com/@lstb?utm_campaign=profile&utm_medium=profile-pageWatch our trailer of Embracing Egypt: https://youtu.be/RYjlB25Cr9Y

In 1971, the National Cancer Act transformed cancer into a national research priority. More than 50 years later, the next frontier is no longer defined solely by scientific discovery, but by how quickly knowledge, lived experience, and patient voices can reshape healthcare itself.The concluding chapter of The Cancer Mavericks: A History of Survivorship explores how the cancer advocacy movement continues to evolve in an era of digital communities, social media, precision medicine, and grassroots activism. Building on the work of pioneers such as Mary Lasker, Rose Kushner, and the generations of survivors who followed, today's advocates are expanding the movement beyond awareness to demand health equity, trusted information, patient-centered research, and meaningful representation in healthcare decision-making.The episode examines how technology has transformed advocacy from local support groups into global communities capable of organizing in real time. Researchers, policymakers, nonprofit leaders, and survivors reflect on the growing influence of digital storytelling, online education, and peer-to-peer networks that connect patients across diagnoses, generations, and geographic boundaries. At the same time, they acknowledge new responsibilities: ensuring accurate medical information, combating misinformation, protecting trust, and keeping patients at the center of innovation.The story also looks ahead to the next generation of advocates. Young leaders are applying lessons learned from decades of cancer activism while drawing inspiration from broader movements for social justice, public health, and community organizing. Their work reflects a simple but enduring truth: meaningful change rarely begins inside institutions. It begins when ordinary people refuse to accept that the system cannot improve.Cancer survivorship has never been a finished story. Every generation inherits the progress achieved by those who came before while confronting challenges uniquely its own. The future of survivorship will be shaped not only by scientific breakthroughs, but by those willing to listen, organize, educate, and ensure that every patient's voice helps define what comes next.RELATED LINKSNational Cancer Institute⁠Cancer Moonshot⁠Centers for Disease Control and Prevention | Division of Cancer Prevention and Control⁠HopeLab⁠Tigerlily Foundation⁠Stupid Cancer⁠FEEDBACKLike this episode? Rate and review The Cancer Mavericks: A History of Survivorship on your favorite podcast platform. For more information, visit CancerMavericks.com. Please send any questions to podcasts@matthewzachary.com.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

For millions of young women and girls, often the first place they turn with questions about their bodies isn't a doctor's office, it's social media which can lead to encountering many misconceptions and outright misinformation. Or, if the right voices show up, it can mean something else entirely. Our guest today, Dr. Charis Chambers, is one of those voices. She's a board-certified OB/GYN with specialty certification in Pediatric & Adolescent Gynecology, and Chief Medical Officer at Clue, a leading period and cycle-tracking app. She's also the founder of The Period Doctor, a platform she launched in 2019 to provide medically accurate reproductive health information and to place more minority physicians in the spaces where patients are already looking for answers. As she tells Raise the Line from Elsevier host Lindsey Smith, Dr. Chambers embraces the role of being a bridge between generations: "I can serve as a medical mediator where I advocate for the child and then educate the parent so that the child's concerns are met." Stay tuned to this important conversation to also learn about: Her new book, The Period and Puberty Parenting Revolution, which tackles many of the same myths she encounters every day in her clinic; Why stubborn myths around periods rarely hold up once you ask where they come from; How she thinks about the responsibility, and limits, of being a trusted medical voice on social media. Mentioned in this episode: Clue The Period Doctor The Period and Puberty Parenting Revolution If you like this podcast, please share it on your social channels. You can also subscribe to the series and check out all of our episodes at www.osmosis.org/podcast

Interview with Joan Pellegrino, MD

In 1987, Mary P. Lovato, a member of Kewa Pueblo in New Mexico, was diagnosed with acute leukemia. To receive a bone marrow transplant, she had to travel more than 800 miles from home because specialized cancer care was unavailable through the Indian Health Service. When she returned, she discovered another obstacle: many in her community feared cancer so deeply that they avoided speaking about it altogether.This episode examines how cancer survivorship exposed profound inequities in the American healthcare system. Long before health equity became a national priority, advocates from underserved communities were confronting disparities rooted in geography, poverty, racism, language, underfunded healthcare systems, and historical mistrust of medical institutions. Their work demonstrated that scientific advances alone cannot improve survival if patients cannot reach, afford, or trust the care available to them.The story follows pioneers including Mary P. Lovato, who built the first national Native-led cancer support and education program for Indigenous communities, and Maimah Karmo, founder of the Tigerlily Foundation, whose breast cancer diagnosis inspired a movement to improve early detection, clinical trial participation, and representation for Black women. Their advocacy challenged longstanding barriers to culturally competent care while highlighting persistent inequities in access to screening, fertility preservation, navigation, and innovative treatments.The episode also explores why diversity in clinical research matters. For decades, many cancer clinical trials disproportionately enrolled White patients, limiting both access to promising therapies and the scientific understanding of how treatments perform across different populations. Researchers, patient advocates, and community leaders responded by redesigning outreach, improving patient navigation, reducing logistical barriers, and insisting that affected communities help shape the research itself.Cancer survivorship cannot be measured solely by scientific breakthroughs. It also depends on whether every patient has a meaningful opportunity to benefit from them. The pursuit of health equity remains one of the defining challenges and enduring responsibilities of modern oncology.RELATED LINKSNational Cancer Institute | Cancer Health Disparities⁠Indian Health Service⁠Tigerlily Foundation⁠National Cancer Institute | Cancer Clinical Trials⁠American Indian Cancer Foundation⁠Abramson Cancer Center | University of Pennsylvania⁠FEEDBACKLike this episode? Rate and review The Cancer Mavericks: A History of Survivorship on your favorite podcast platform. For more information, visit CancerMavericks.com. Please send any questions to podcasts@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 2000, Katie Couric underwent a live colonoscopy on national television following the death of her husband, Jay Monahan, from colorectal cancer at age 42. The broadcast demystified a procedure many Americans feared, led to an estimated 20% increase in colonoscopy screenings, and became one of the clearest examples of how public storytelling can change healthcare behavior.This episode examines how celebrities, journalists, filmmakers, and entertainers helped reshape the public conversation about cancer during a period when survivorship was becoming increasingly visible. As breakthroughs in targeted therapies, immunotherapy, and early detection allowed more people to live beyond cancer, public figures used their platforms to encourage screening, reduce stigma, and accelerate research. Their influence extended far beyond awareness campaigns, helping transform cancer from a private diagnosis into a national public health conversation.Central to this story is Laura Ziskin, the Hollywood producer behind Pretty Woman and the Spider-Man films, whose metastatic breast cancer diagnosis inspired the creation of Stand Up To Cancer. Working alongside Couric and leaders from entertainment, journalism, and biomedical research, Ziskin championed a new funding model that required multidisciplinary scientific collaboration, helping accelerate discoveries that contributed to multiple FDA-approved cancer therapies. The episode also highlights the advocacy of actor Patrick Dempsey, whose family's experience with ovarian cancer led to the creation of the Dempsey Center, expanding support for patients and caregivers beyond medical treatment.The story also asks what celebrity advocacy often leaves unsaid. Financial toxicity, caregiver burden, chronic pain, mental health, and the long-term effects of treatment rarely receive the same attention as dramatic diagnoses or breakthrough cures. As cancer survivorship continues to evolve, the greatest challenge may not be convincing people to care about cancer, but helping them understand what it truly means to live with and beyond it.RELATED LINKSStand Up To Cancer⁠Katie Couric Media⁠Dempsey Center⁠American Association for Cancer Research⁠National Cancer Institute⁠Dana-Farber Cancer Institute | Adult Survivorship Program⁠FEEDBACKLike this episode? Rate and review The Cancer Mavericks: A History of Survivorship on your favorite podcast platform. For more information, visit CancerMavericks.com. Please send any questions to podcasts@matthewzachary.com.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

"I'd already finished my cardiovascular unit. I'd finished my pulmonary unit. I had never heard about this in any of my classes." That was Dr. Joel Bervell's reaction to discovering that a device used every day in hospitals -- the pulse oximeter -- reads less accurately on darker skin tones. He posted a 30-second video about this consequential discrepancy that, to his utter surprise, gained over 500,000 views by the next morning. That video launched Dr. Bervell into orbit as a social media presence and created his identity as The Medical Mythbuster. In just a few years, he's built a following of two million people, earned a Peabody Award and was named to the inaugural Time 100 Creators list, all while finishing his residency.  On this episode of Raise the Line, host Lindsey Smith welcomes Dr. Bervell to explore the roots of this kind of bias and the real world impact of drawing attention to it. “The most impactful biases in medicine exist because no one stops to ask who was included in the original data and who was left out,” Dr. Bervell explains. Stay tuned to also learn about: His YouTube animated series The Doctor is In which helps kids understand how their bodies work, as well as providing medical role models; How to build trust with marginalized communities; His forthcoming book, The Default Body which examines who medicine was actually designed for. Mentioned in this episode:Dr. Bervell on InstagramTikTok ChannelFacebook"The Doctor Is In" Show If you like this podcast, please share it on your social channels. You can also subscribe to the series and check out all of our episodes at www.osmosis.org/podcast

In 2006, a landmark report titled Closing the Gap: Research and Care Imperatives for Adolescents and Young Adults with Cancer confirmed what young survivors had been saying for years. While survival rates for children and older adults had steadily improved, adolescents and young adults had experienced decades of stalled progress. They had become cancer's lost generation.This episode explores how young adult survivors transformed their shared isolation into one of the most influential grassroots movements in cancer advocacy. Diagnosed during the years typically devoted to education, careers, relationships, and starting families, patients between the ages of 15 and 39 confronted challenges that extended far beyond treatment. Fertility preservation, sexual health, employment, financial toxicity, insurance, and long-term quality of life were rarely discussed in oncology clinics, leaving many to navigate survivorship alone.The episode follows advocates including Tamika Felder, Lindsay Avner, Heidi Adams, Doug Ulman, and Dr. Archie Bleyer, whose research and advocacy fundamentally changed how medicine understands adolescent and young adult cancer. Through organizations including Planet Cancer, Fertile Hope, the Lance Armstrong Foundation, and later Stupid Cancer, survivors built online communities, educational resources, conferences, and national partnerships that challenged long-standing assumptions about cancer care. Their work helped establish fertility preservation as a standard discussion before treatment, expanded research dedicated to adolescent and young adult oncology, and elevated quality of life as a critical clinical outcome alongside survival.The movement also demonstrated the power of lived experience to reshape medicine. Survivors became researchers, educators, nonprofit founders, and policy advocates, insisting that cancer care account not only for years of life saved, but for the lives patients hoped to build afterward.What began as a search for peers evolved into a national movement that permanently transformed adolescent and young adult oncology. Today, dedicated research programs, clinical fellowships, survivorship resources, and patient advocacy organizations continue to build on the foundation these young cancer mavericks created.RELATED LINKSNational Cancer Institute | Adolescent and Young Adult (AYA) Cancer Program⁠Closing the Gap: Research and Care Imperatives for Adolescents and Young Adults with Cancer⁠American Society of Clinical Oncology | Fertility Preservation Guidelines⁠Stupid Cancer⁠Livestrong Foundation⁠Journal of Adolescent and Young Adult Oncology⁠FEEDBACKLike this episode? Rate and review The Cancer Mavericks: A History of Survivorship on your favorite podcast platform. For more information, visit CancerMavericks.com. Please send any questions to podcasts@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 2006, the Institute of Medicine published From Cancer Patient to Cancer Survivor: Lost in Transition, concluding that millions of Americans were surviving cancer only to find themselves navigating a healthcare system unprepared for life after treatment. The report challenged oncology to recognize that curing cancer was not the end of care, but the beginning of survivorship.This episode explores how the growing cancer survivorship movement exposed the long-term consequences of cancer treatment that medicine had largely overlooked. As survival rates improved following the National Cancer Act of 1971, millions of survivors faced chronic fatigue, neuropathy, infertility, cognitive impairment, financial hardship, employment discrimination, anxiety, depression, and post-traumatic stress. These were not rare complications. They became defining features of survivorship for many patients.Drawing on the work of oncologist Dr. Patricia Ganz, survivor advocate Ellen Stovall, and researchers, clinicians, and survivors across the country, the episode examines how survivorship research expanded beyond recurrence and mortality to include quality of life, psychosocial care, rehabilitation, and long-term follow-up. Their efforts helped establish survivorship care plans, multidisciplinary survivorship clinics, and a broader understanding that cancer affects every aspect of a person's life long after treatment ends.The episode also confronts persistent inequities in survivorship care. Insurance coverage often ends when treatment stops, supportive services remain inconsistent, financial toxicity continues to drive medical hardship, and racial, geographic, and socioeconomic disparities still influence who receives comprehensive follow-up care. For many survivors, finishing treatment simply marks the beginning of another struggle.Modern oncology increasingly recognizes that surviving cancer is measured by more than years of life. It is also measured by quality of life, dignity, access to care, and the ability to rebuild a future after treatment. That evolution remains one of the most significant legacies of the cancer survivorship movement.RELATED LINKSNational Academy of Medicine | ⁠From Cancer Patient to Cancer Survivor: Lost in Transition⁠National Cancer Institute Office of Cancer Survivorship⁠American Society of Clinical Oncology | Survivorship Compendium⁠CancerCare⁠HopeWell Cancer Support⁠National Coalition for Cancer Survivorship⁠FEEDBACKLike this episode? Rate and review The Cancer Mavericks: A History of Survivorship on your favorite podcast platform. For more information, visit CancerMavericks.com. Please send any questions to podcasts@matthewzachary.com.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

Despite gains in recent years, Black, Hispanic, and Asian communities are still under-represented in the U.S. nursing workforce. We're going to explore that gap and how to close it on this episode of Raise the Line from Elsevier with Dr. Ernest Grant, Vice Dean for Diversity, Equity, Inclusion and Belonging at the Duke University School of Nursing. "You get a patient who is more compliant when they see someone who looks like them, who is from their culture and who can advocate on their behalf," he tells host Lindsey Smith.  Dr. Grant bases that and other insights on a rich professional background that includes 50 years in nursing, being a leading advocate for his profession and breaking down barriers himself as a male nurse of color and the first man elected president of the American Nurses Association.  In this thoughtful conversation, Dr. Grant reflects on what it took to earn credibility in leadership roles, how he's navigating the political climate on DEI initiatives, and the causes and solutions to the persistent shortage in nursing faculty, among other pressing issues. Tune in for a uniquely-informed look at what it will take to build a stronger, more representative nursing profession. Mentioned in this episode: Duke University School of Nursing American Nurses Association If you like this podcast, please share it on your social channels. You can also subscribe to the series and check out all of our episodes at www.osmosis.org/podcast

In 1967, breast surgeon Dr. Harold P. Freeman arrived at Harlem Hospital expecting to treat cancer. Instead, he confronted a healthcare system where poverty, racism, lack of insurance, and institutional barriers often determined who lived long enough to receive treatment. Patients frequently arrived with advanced disease, not because medicine lacked answers, but because access to care had failed them.This episode explores how cancer survivorship expanded beyond medical breakthroughs to include healthcare access, health equity, and organized advocacy. Building on the early work of the National Coalition for Cancer Survivorship (NCCS), it examines the recognition that surviving cancer depended not only on research, but also on whether patients could navigate a fragmented healthcare system.Freeman responded by creating one of the nation's first patient navigation programs at Harlem Hospital in 1990. Community-based navigators helped patients overcome practical barriers including insurance, transportation, appointments, communication, and fear. The model dramatically improved timely diagnosis and treatment, increased breast cancer survival in Harlem, and ultimately inspired the Patient Navigator Outreach and Chronic Disease Prevention Act of 2005, establishing navigation as a cornerstone of modern oncology care.The episode also follows cancer survivor Ellen Stovall, whose leadership transformed survivorship into a national policy movement. Through the NCCS, she united advocates across cancer types, fought for insurance protections, expanded access to clinical trials, helped shape the creation of the Office of Cancer Survivorship at the National Cancer Institute, and organized the landmark 1998 National March for Cancer Survivorship in Washington, D.C. Her work reframed survivorship as a public policy issue rather than a personal experience.Together, Freeman and Stovall demonstrated that scientific progress alone could not eliminate disparities in cancer outcomes. Their work established two enduring principles that continue to shape oncology today: patients need someone to help them navigate care, and survivors must have a voice in the policies that govern it. Modern cancer survivorship depends on both.RELATED LINKSNational Coalition for Cancer Survivorship⁠Harold P. Freeman Patient Navigation Institute⁠National Cancer Institute Office of Cancer Survivorship⁠Patient Navigator Outreach and Chronic Disease Prevention Act of 2005⁠American Cancer Society⁠Tuskegee Study Timeline | Centers for Disease Control and Prevention⁠FEEDBACKLike this episode? Rate and review The Cancer Mavericks: A History of Survivorship on your favorite podcast platform. For more information, visit CancerMavericks.com. Please send any questions to podcasts@matthewzachary.com.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

Joshua Resnikoff is the CEO and Co-Founder of Sunstone Health, a company using AI to help families of children with developmental delays like autism and epilepsy get answers faster, turning years of waiting into weeks. Top 3 Value Bombs 1. Success is not a lottery ticket; it is a system built through relentless effort, repetition, and commitment to a proven process. 2. Purpose-driven companies can endure challenges because the mission creates resilience, attracts talent, and inspires people to keep going when things get hard. 3. Families facing difficult diagnoses are not alone. Faster answers and earlier interventions can dramatically improve outcomes and quality of life. Check out Joshua's website to learn more. Download the app and explore available resources - Sunstone Health Sponsors HighLevel - The ultimate all-in-one platform for entrepreneurs, marketers, coaches, and agencies. Learn more at HighLevelFire.com. ThriveTime Show - Is your business stuck? Join Eric Trump and Clay Clark's life-changing business conference November 5th and 6th in Tulsa, Oklahoma. ThriveTimeShow.com/eofire.  

Welcome to a very, very, very special bonus episode of Out of Patients, and one unlike anything published on this feed before. For nearly 20 years, Matthew Zachary has handed these microphones to patients, caregivers, doctors, advocates, troublemakers, and people with something worth saying. This time, he handed them to his daughter. Hannah Greenzweig grew up around this show, and now she has commandeered the studio with 3 of her wonderfully creative high school friends to talk about something they built entirely themselves. There is an enormous amount of Dad Pride baked into this episode, along with the strange and wonderful realization that sometimes your kid grows up, takes your chair, takes your microphone, and produces a better show without you.Hannah Greenzweig, Michael Aidinov, Gwendolyn Baldini, and Astronomy are student artists from the Roundabout Youth Ensemble at James Madison High School in Brooklyn. Working alongside teaching artists from Roundabout Theatre Company, they spent a school year creating an original play from the ground up, writing every scene, developing every character, and producing the performance themselves.Instead of discussing a Broadway production, they dissect one they invented.Their play, Subject Matter, began with a room full of improbable ideas. Murderous bounce houses, pirate family sagas, underwater adventures, courtroom dance battles, and birthday parties at math museums all competed before the group settled on an absurd rivalry between New York's fictional History Museum and Math Museum. From there, they built a fully staged comedy about institutional competition, sabotage, oversized personalities, and the unexpected discovery that history and mathematics need each other more than either side wants to admit.The conversation pulls back the curtain on a creative process most audiences never see. The students explain how scenes evolved through constant rewrites, how characters emerged from improvisation, how costumes came together with last minute ingenuity, and how rehearsals often collapsed into uncontrollable laughter. They recount cutting favorite ideas, solving production problems with limited resources, and trusting each other enough to keep rewriting until the story worked.The episode also captures something harder to script: teenagers speaking honestly about collaboration without adults translating their experience. They celebrate classmates who stepped into unexpected roles, teachers who quietly held the production together, and the strange joy of creating something that exists only because everyone showed up.It is a conversation about theater, friendship, education, creativity, and what happens when 4 young artists get the microphones and the adults get out of the way.RELATED LINKSRoundabout Theatre CompanyRoundabout Youth EnsembleJames Madison High SchoolFEEDBACKLike this bonus episode? Rate and review Out of Patients on your favorite podcast platform. For guest suggestions or sponsorship email podcasts@matthewzachary.comSee Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

What should count as reliable evidence supporting medical inductions when traditional evidentiary hierarchies are epistemically inadequate? This dissertation argues that the evidentiary status of mechanisms, broadly understood as reasoning based on understanding of causal biomedical systems, in rare disease medical research should be raised. This is an epistemological claim about evidence hierarchies in medicine, and its defense will be grounded in philosophy of science analysis (specifically via theories of classification in philosophy of medicine, the Cartwrightian account of causation, and the nature of scientific induction) of case studies. Current evidence-based medicine hierarchies prioritize evidence generation that propounds biostatistical inductions based on historical naturalist reference class foundations. Generating biostatistical inductions is not an epistemically adequate method of evidence generation for rare disease because of epistemic limitations surrounding the ability to generate and the realistic epistemic power of developing a statistical induction in rare disease. The refinement of reliable research methodology and accurate inductions (epistemological progress) and therapeutic breakthroughs (pragmatic progress) in rare disease medicine depend on the contribution of mechanistic reasoning to evidence-based decisions rather than on statistically-enabled evidence generation.

“I have no idea what I'm doing. I've never done this before. I am a pediatrician, but I have not been trained on this. I couldn't be more qualified to be Soraya's mother, and yet I am clueless.” Tasha FaruquiIn this conversation, Dr. Tasha Faruqui shares her lived experience raising her daughter who has been diagnosed with TAOK-1. It is a story of simultaneously seeing two sides of the rare disease experience. And that surfaces a ton of insights that parents raising kiddos with rare disease can learn from. As a pediatrician, she understands medical terminology, lab results, and other measure. As a mom, she now knows what it feels like to be gaslighted. This experience has shown her the value of honesty, in both directions and with her children. Her family has coined the term “sucking the joy out of life” which perfectly captures the duality of the situation. Undoubtedly, a rare disease can take a huge emotional toll and, at the same time, bring the moments of joy into stark focus. It all depends on how you look at it.Tasha wants our listeners to understand that the story is not finished. Not hers. Not theirs. You can learn more about her ongoing story in her book KEEP YOUR HEAP UP: A MOTHER'S STORY OF CHASING JOY IN THE FACE OF GRIEF.

A man is struck by a car on the streets of Los Angeles. In the emergency department, a CT scan ordered to look for traumatic injuries reveals something nobody expected: a mass in his colon. Days later, sitting across from Dr. Belinda Waltman, he calls the accident “a blessing in disguise.” Then he changes the subject. He is less worried about cancer than about whether he can afford to miss another day of work. In this season finale of Standard Deviation, host Dr. Oliver Bogler explores what happens when biomedical science collides with the realities of the healthcare safety net. Dr. Waltman, a primary care physician in Los Angeles County, specializes in expedited cancer workups for uninsured and underinsured patients. Every diagnosis arrives carrying another set of questions about housing, transportation, food insecurity, wages, and survival that rarely appear in medical records or scientific literature. For years, Waltman carried those stories without knowing how to bring them into the academic record. As a full-time clinician without a research lab, grant funding, or publication pipeline, she faced barriers familiar to many working scientists and physicians whose most important observations happen outside traditional research settings. With support from the Life Science Editors Foundation's JEDI program, those experiences became The Margins Matter, a narrative medicine essay published in JAMA that argues the social realities surrounding cancer care are not background details. They are part of the disease itself. Bogler traces how editorial mentorship transformed lived clinical experience into published scholarship while asking a larger question about who gets to shape the scientific record. The conversation examines cancer care, Medicaid, health-related social needs, medical publishing, and the structural incentives that determine which stories become evidence and which disappear from view.The result is a conversation about documentation, visibility, and why the margins of medicine often determine who survives long enough to benefit from its advances.RELATED LINKSDr. Belinda Waltman⁠The Margins Matter | JAMA⁠The Margins Matter | PubMed⁠Life 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.

What does it take to compete on the world's biggest stage and then pivot to one of the most demanding training paths in professional life? Today's guest, Samantha "Sammy" Kolowrat, has done both, and she has some fascinating insights into the commonalities of those two worlds on this episode of Raise the Line. “Something that really drew me to medicine is the team atmosphere that's there as you work towards a common goal, and there's this level of intensity that's very reminiscent of the experiences I had as a professional athlete.” Originally from Prague, Kolowrat represented Czechia at six IIHF Women's World Championships and the 2022 Beijing Olympics, and also captained the Division I women's hockey team at the University of Vermont while earning degrees in biology and pharmacology.  As she starts an anesthesiology residency at Vanderbilt University, she credits her athletic career with shaping how she handles pressure, feedback, and teamwork in medicine. "The more I improve, the more knowledge I acquire, the more skills I hone, the better care my patients get," she tells host Lindsey Smith, describing what drew her to a field that rewards the same relentless fine-tuning as elite sports. This engaging conversation also explores: How crippling performance anxiety as a Division I athlete ended up preparing Kolowrat for the operating room; Why she was drawn to anesthesiology's "well-oiled machine" atmosphere; The mentorship gap she's working to close for the next generation of athlete-physicians. Mentioned in this episode: Vanderbilt University Anesthesiology Residency Program If you like this podcast, please share it on your social channels. You can also subscribe to the series and check out all of our episodes at www.osmosis.org/podcast

In 1986, 23 survivors, physicians, nurses, attorneys, and community organizers gathered in Albuquerque, New Mexico, for a weekend that would permanently change the language and politics of cancer. Working late into the night, they debated not only strategy, but identity, ultimately declaring that from the moment of diagnosis, every person with cancer is a survivor.This episode traces the social and political forces that gave birth to the modern cancer survivorship movement. As advances in early detection and treatment allowed more people to live beyond cancer, survivors discovered that finishing treatment did not mean returning to normal life. Many faced employment discrimination, loss of insurance, social stigma, infertility, chronic health complications, and a healthcare system that viewed survival as the end of care rather than the beginning of a new chapter.Against the backdrop of the civil rights, disability rights, and community health movements of the 1960s and 1970s, physicians, activists, and survivors challenged medicine's paternalistic culture and demanded a greater voice in decisions affecting their lives. Central to this story are physician and survivor Dr. Fitzhugh Mullan, whose landmark 1985 essay, Seasons of Survival, redefined survivorship as a lifelong continuum, and community organizer Katherine Logan, whose determination united dozens of grassroots organizations into what became the National Coalition for Cancer Survivorship.The coalition's founding established principles that continue to shape oncology today. Survivors were no longer defined solely by disease or treatment outcomes. Their experiences became evidence. Their voices became essential to clinical research, healthcare policy, and patient advocacy. By redefining survivorship as an ongoing experience rather than a destination, the movement challenged medicine to recognize the lasting physical, emotional, financial, and social consequences of cancer.The ideas forged during that weekend in Albuquerque became the foundation of modern cancer survivorship. Nearly 40 years later, the coalition's defining principle, that survivorship begins at diagnosis, continues to influence cancer care, research, policy, and the way millions of people understand life after cancer.RELATED LINKSNational Coalition for Cancer Survivorship⁠National Cancer Institute Office of Cancer Survivorship⁠The New England Journal of Medicine⁠Americans with Disabilities Act (ADA.gov)⁠Library of Congress | Civil Rights History Project⁠White Coat, Clenched Fist by Fitzhugh Mullan⁠FEEDBACKLike this episode? Rate and review The Cancer Mavericks: A History of Survivorship on your favorite podcast platform. For more information, visit CancerMavericks.com. Please send any questions to podcasts@matthewzachary.com.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

Recorded live from BIO 2026 in San Diego, Gil captures a conversation with Craig Martin, Founder and CEO of Orphan Therapeutics Accelerator and Amber Freed, Founder & CEO of the Non-profit, SLC6A1 Connect that is equal parts heartbreak, science, economics, and stubborn optimism. Gil engages two of the rare disease world's most energized advocates immediately following a panel they participated in together on ultra-rare diseases. What emerged was a wide-ranging discussion about the gap between breakthrough science and patient access, the systemic failures that leave life-saving molecules on a shelf, and the personal cost of building a movement from grief.

Our guest this week is Jeremy Warren of Tulsa, OK a graphic artist, founder of DOSA (Dads On Special Assignment) and fatther of six boys, including one with a rare disease.  Jeremy and his wife, Heidi, have been married for 22 years and are the proud parents of six boys ranging in age from 2 to 18 including, their second oldest, Landon (16) who has a rare disease, which was officially diagnosed just a few years ago as PURA Syndrome and a secondary condition known as P-O-L-G, both of which have resulted in severe neurodevelopmental delays and intellectual disabilities, plus a slew of other side effects.The mission of DOSA is to serve dads of children with special needs by providing tools and resources that equip them to become healthier mentally, physically, and spiritually in order to lead their families well and embrace their role as a dads on special assignment.We also learn about a couple of organizations that Landon has benefited from, including:Little Light HouseOK Family NetworkIt's an uplifting story about a father's commitment to family and service to others, all on this episode of the SFN Dad To Dad Podcast.Show Notes - Phone – (918) 269-1409Email –  jw@dosausa.orgDads On Special Assignment - https://dosausa.org/Special thanks to all those who supported the SFN U.S. Tour, a month-long, 50-state, 60+ stop tour that took place from May 21 to June 21, 2026: to strengthen and grow the Special Fathers Network and distribute 1,000+ complimentary copies of our new book: Dads Raising Children With Special Needs & Disabilities: A Guide For 21st Century Dads. Special Fathers Network –SFN is a dad to dad mentoring program for fathers raising children with special needs. Many of the 900+ SFN Mentor Fathers, who are raising kids with special needs, have said: “I wish there was something like this when we first received our child's diagnosis. I felt so isolated.  There was no one within my family, at work, at church or within my friend group who understood or could relate to what I was going through.”SFN Mentor Fathers share their experiences with younger dads closer to the beginning of their journey raising a child with the same or similar special needs. The SFN Mentor Fathers do NOT offer legal or medical advice, that is what lawyers and doctors do. They simply share their experiences and how they have made the most of challenging situations.Check out the 21CD YouTube Channel with dozens of videos on topics relevant to dads raising children with special needs - https://www.youtube.com/channel/UCzDFCvQimWNEb158ll6Q4cA/videosPlease support the SFN. Click here to donate: https://21stcenturydads.org/donate/Special Fathers Network: https://21stcenturydads.org/  

In 1971, President Richard Nixon signed the National Cancer Act, transforming cancer research with an unprecedented federal investment and launching what became known as the War on Cancer. The legislation did not emerge from scientific discovery alone. It was the culmination of decades of relentless advocacy by researchers, philanthropists, journalists, and patients who believed cancer demanded the same national commitment that had put astronauts on the Moon.This episode traces the origins of the cancer survivorship movement by returning to a time when cancer was rarely discussed in public, many physicians withheld diagnoses from their patients, and surgery offered few lasting cures. It follows the pioneering work of pathologist Dr. Sidney Farber, whose early chemotherapy research challenged conventional thinking, and Mary Lasker, whose political strategy, fundraising, and public campaigns helped transform cancer from a private tragedy into a national public health priority. Together, they built the coalition that reshaped federal support for oncology research and forever changed the relationship between science, government, and the American public.The story then turns to journalist and breast cancer survivor Rose Kushner, whose refusal to accept the standard one-step radical mastectomy challenged nearly a century of surgical dogma. Working alongside surgeon Dr. Bernard Fisher, Kushner helped bring evidence-based medicine to breast cancer treatment through randomized clinical trials that demonstrated less invasive surgery could achieve equivalent outcomes. Their efforts changed clinical practice, strengthened informed consent, and helped establish the principle that patients should participate in decisions about their own care.The breakthroughs explored in this episode extended far beyond new treatments. They redefined the role of patients in medicine, accelerated clinical research, and laid the foundation for modern cancer survivorship. The movement that followed would not simply help more people live longer. It would change what surviving cancer meant.RELATED LINKSNational Cancer Institute⁠National Cancer Act of 1971⁠American Cancer Society⁠Dana-Farber Cancer Institute⁠National Library of Medicine⁠The New England Journal of Medicine⁠FEEDBACKLike this episode? Rate and review The Cancer Mavericks: A History of Survivorship on your favorite podcast platform. For more information, visit CancerMavericks.com. Please send any questions to podcasts@matthewzachary.com.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

An 11-year-old boy in rural Zambia once told Dr. Genesis Mwamba that he was about to attend school wearing shoes for the first time in his life. That moment, Dr. Mwamba says, crystallized why he started the Lead Me Back Foundation to provide school supplies and other support to marginalized communities in his native country.   As you'll learn in this inspiring installment in our NextGen Journeys series, Dr. Mwamba started the foundation in 2021while still a medical student because he had experienced the power of education as an “equalizer” in his own life, taking him from humble roots to a career in medicine. He and his colleagues have grown the bootstrapped organization to a point where it now provides hundreds of thousands of people across the country with educational access, climate education and community health clinics. “I've always been drawn to opportunities and initiatives that bring help to humankind,” he tells Raise the Line host Dr. Parsa Mohri. This episode also explores: What building "with" a community rather than "for" it looks like in practice; The storytelling strategy that attracted donors and partners; How his mother's untimely death inspired his commitment to preventive medicine.   Mentioned in this episode: Lead Me Back Foundation If you like this podcast, please share it on your social channels. You can also subscribe to the series and check out all of our episodes at www.osmosis.org/podcast

Long before cancer survivors organized into a movement, Hollywood had already shaped how Americans understood the disease. Films rarely used the word “cancer,” physicians often withheld diagnoses from patients, and the people who survived were almost nowhere to be found on screen.Recorded before The Cancer Mavericks: A History of Survivorship became a documentary series, this bonus conversation explores where the project first began. Matthew Zachary sits down with his mother, Roz Greenzweig, a retired educator and lifelong film enthusiast whose memories of classic cinema became an unexpected lens for understanding how cancer was portrayed throughout the twentieth century.Together, they revisit landmark films including Dark Victory, Love Story, and other iconic portrayals that reflected an era when cancer was treated as unspeakable, inevitable, and almost always fatal. Their conversation contrasts those carefully constructed Hollywood narratives with the lived reality of a family confronting a brain cancer diagnosis in 1995, revealing how popular culture both reflected and reinforced the fears surrounding the disease.The discussion also foreshadows many of the themes explored throughout the documentary series: the evolution of patient advocacy, the emergence of cancer survivorship, the role of caregivers, and the power of storytelling to influence public understanding. Before policy changed, before advocacy organizations grew into national movements, conversations like these were already challenging long-held assumptions about what cancer looked like and who had the right to tell its story.Consider this the prologue to The Cancer Mavericks. Before the movement found its history, it began with a family trying to make sense of the stories they had inherited.RELATED LINKSAmerican Cancer Society⁠National Cancer Institute⁠American Film Institute⁠ER (NBC)⁠50/50 (Official)⁠Chasing Life (ABC Family Archive)⁠FEEDBACKLike this episode? Rate and review The Cancer Mavericks: A History of Survivorship on your favorite podcast platform. For more information, visit CancerMavericks.com. Questions? Email podcasts@matthewzachary.com.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

"We have an untapped army of 200,000 PAs that really could step up and drive some change in the healthcare system if we weren't restricted,” says Dr. Jennifer Kolb, capturing her motivation for pushing to update practice regulations for physician associates that date back more than 50 years.  As Chief Medical Officer and Senior Vice President of Clinical Affairs at the American Academy of Physician Associates, Dr. Kolb has been in the middle of the fight at the state and federal level to grant PAs more independence from physicians, full billing rights, and the increased ability to practice across state lines, among other changes.  In this pertinent conversation with Raise the Line host Lindsey Smith, Dr. Kolb explains how these updates could help close huge gaps in access to healthcare, better manage the fight against chronic diseases and improve patient outcomes.   Dr. Kolb also addresses:  Why the name shift from "assistant" to "associate" took her years to fully appreciate; How a 10-year gap in life expectancy across Chicago zip codes shapes her view of health equity; Why PA's shouldn't wait for permission to start making change in their communities. Mentioned in this episode:American Academy of Physician Associates   If you like this podcast, please share it on your social channels. You can also subscribe to the series and check out all of our episodes at www.osmosis.org/podcast

Chiesi Global Rare Diseases has rapidly evolved from a small, regional rare‑disease business into a global organization, leveraging strategic deals and development bets to reshape standards of care for patients worldwide. Giacomo Chiesi, head of the unit, discusses how the business has grown through acquisitions, its move into CRISPR gene editing and blood–brain barrier‑crossing enzyme platforms, and its broader vision of delivering meaningful quality‑of‑life improvements for people living with rare diseases.

Rebecca Bloom is a former employee benefits and executive compensation attorney who spent more than 25 years helping women navigate cancer, work, insurance, disability coverage, and financial survival. She is the founder and author of When Women Get Sick, a book built from decades inside the legal, workplace, and patient advocacy systems most people only discover after diagnosis.Bloom started in Big Law at Simpson Thacher handling employee benefits and compensation work she originally chose to pay off student loans. Then her mother was diagnosed with breast cancer. Suddenly the language she used in corporate law offices became the language of survival at home. Explanation of benefits forms. Coverage disputes. Second opinions. Disability protections. Medical leave. Bills no one could explain.That collision changed the direction of her life.In this episode, Bloom explains how serious illness quietly turns patients into unpaid administrators managing paperwork, logistics, financial risk, and emotional labor while trying to survive treatment. She breaks down how employer based health insurance shapes nearly every aspect of cancer care in America and why women often carry the invisible burden of protecting everyone else from discomfort while they themselves fall apart.The conversation digs into workplace power, the illusion of the healthcare “safety net,” caregiver exhaustion, and the class divide hiding underneath patient empowerment culture. Bloom explains why educated, insured women with resources still struggle to navigate healthcare bureaucracy and what happens to patients without those advantages.This episode explores cancer care, health insurance, employee benefits, patient advocacy, workplace protections, caregiving, and the structural incentives that force sick people to become project managers of their own survival.RELATED LINKSRebecca BloomWhen Women Get SickBay Area Cancer ConnectionsSimpson Thacher & BartlettFEEDBACKLike 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.