POPULARITY
14 episodes with patient advocates
6 episodes with patient advocates
6 episodes with patient advocates
9 episodes with patient advocates
2 episodes with patient advocates
2 episodes with patient advocates
2 episodes with patient advocates
3 episodes with patient advocates
2 episodes with patient advocates
Why do so many healthcare providers still view obesity as a lifestyle choice rather than a complex chronic disease—and how can we change that?In this Echo Episode, Dr. Andrea Austin interviews Dr. Katherine Saunders about her journey from pre-med influences to pioneering obesity medicine at Weill Cornell and co-founding FlyteHealth. They explore obesity's scientific underpinnings, the impact of weight bias, practical advice for EM physicians in brief encounters, common weight-promoting medications, the value of bariatric surgery, and emerging tools like genetic testing and AI-driven algorithms. Katherine emphasizes empathy, permission-based discussions, and multidisciplinary approaches to treat obesity as the root cause of over 200 comorbidities.You'll hear how they:Debunk obesity myths perpetuated in medicine, framing it as a chronic disease requiring medical intervention beyond "eat less, exercise more"Provide strategies for EM docs to discuss weight compassionately in 5 minutes, including asking permission, using neutral language, and offering resources without judgmentDiscuss weight-promoting factors like medications (e.g., progesterone-focused birth control), stress, genetics, and sleep apnea, plus the role of bariatric surgery and anti-obesity medsHighlight innovative obesity care through FlyteHealth's telehealth platform, AI algorithms for personalized treatment, and collaborative post-surgical managementIf you're a physician encountering obesity-related issues in acute care or seeking better ways to support patients, this episode delivers empathetic insights and actionable tools for transformative care.About the Guest:"Obesity isn't just a lifestyle problem, it's a complex chronic disease we can now treat effectively." – Dr. Katherine SaundersDr. Katherine Saunders, MD, FTOS is a leading obesity medicine expert, co-founder and executive vice president of FlyteHealth, and clinical assistant professor at Weill Cornell Medicine. She received her undergraduate degree Phi Beta Kappa/Summa Cum Laude from Dartmouth College and her medical degree from Weill Cornell Medical College, where she became a member of the Alpha Omega Alpha Honor Medical Society. She completed her residency at New York-Presbyterian and was the first obesity medicine fellow at Weill Cornell's Comprehensive Weight Control Center. Board-certified in internal medicine and obesity medicine, she hosts the Weight Matters podcast, speaks internationally, and has been recognized as a top influencer in wellness.
What happens when the adrenaline of emergency medicine meets the high personal cost of shift work and family demands?In this Echo Episode, Dr. Andrea Austin talks with Dr. Miranda Phillips about her transition from full-time trauma center EM to a life of financial freedom and wellness. Inspired by a mission trip to Guatemala at age 16, Miranda pursued medicine to make a profound impact. She reflects on loving EM's wide scope but leaving due to burnout, single parenthood challenges, and value misalignments. Discover how she built passive income surpassing her salary, healed through lifestyle medicine, and now helps physicians via investing education and holistic care.You'll hear how they:Address EM burnout from nights, weekends, and high emotional costs, and the courage to pivot when family needs come firstBuild financial security through passive investing in real estate syndications, creating a safety net without more time demandsIntegrate lifestyle medicine to reverse chronic conditions, optimize personal health, and reclaim joy through routines like exercise and sleepInspire hope by challenging regrets, seeking mentors, and living aligned with values for a fulfilling post-burnout lifeIf you're an EM physician facing burnout or seeking financial and health freedom, this episode offers practical insights and encouragement for change.About the Guest:“I love what I'm doing. I love being financially free.” – Dr. Miranda PhillipsDr. Miranda Phillips is an emergency medicine physician, entrepreneur, investor, philanthropist, and international speaker. Starting her career in 2009 after a transformative mission trip, she practiced full-time EM until 2020, when burnout and family priorities led her to pivot. Co-founder of Elite Wealth and Wellness, she educates physicians on passive investing for financial independence. Board-certified in lifestyle medicine, she practices telemedicine at Saha Vita Institute, helping patients optimize health and reverse conditions like diabetes and hypertension.
What draws someone with a big heart and endless curiosity into the narrowing path of medicine, and how do they reclaim their multifaceted self amid burnout and systemic challenges?In this Echo Episode, Dr. Andrea Austin talks with Dr. Amanda River about her unconventional journey in emergency medicine, from medical school friendships to leading a cannabis clinic and pursuing lifestyle medicine. Amanda reflects on her sister's Ewing sarcoma diagnosis that sparked her interest in medicine, the sacrifices of medical training, and the pride and frustrations of EM practice. They discuss the pathology of long hours, sleep deprivation myths, understaffing, and metrics that prioritize billing over patient care, while exploring ways to align personal values with professional life.You'll hear how they:Unpack the roots of burnout in EM, from value misalignments to unsafe staffing ratiosChallenge limiting beliefs in medical training, like 80-hour weeks and "scut work" that wastes physician expertiseAdvocate for system redesigns that empower teams, respect boundaries, and integrate patient voices for better outcomesFind hope in diverse career paths, from rural locums to cannabis and lifestyle medicine, to sustain joy in healthcareIf you're an EM physician questioning the status quo or seeking ways to realign your practice, this honest conversation offers insights into building a more humane system.About the Guest:“Emergency medicine is a mindset, not a place.” – Dr. Amanda RiverDr. Amanda River is an emergency medicine physician credentialing at a critical access hospital in rural Iowa, with locums experience in Oregon and Guam's public hospital. A former owner and medical director of a private cannabis medicine clinic, she is also board-certified in lifestyle medicine and passionate about integrating holistic approaches into EM. Her journey reflects a commitment to values-driven care, from farm roots to global practice.
In Part 2 of this two-part Echo Episode, Dr. Andrea Austin and Dr. Mehrdad Soleimani picks up right where they left off: two emergency physicians who actually like coming to work, unpacking the systemic forces that are burning everyone else out. Dr. Mehrdad explains why he co-founded NeoMd Spa. It started with one vial of Botox and a refusal to be a 60-year-old shift-worker, how physicians surrendered control of their profession to corporations, and why financial wellness is the missing pillar no one talks about. Dr. Andrea and Dr. Mehrdad wrestle with the death of the democratic group, the rise of corporate metrics, and the urgent need for physicians to reclaim leadership, unity, and their voices.Wrapped in stories of cross-specialty happy hours, Peloton-fueled pandemic survival, and a beautiful real-time patient handoff, this episode is a rallying cry: stop complaining, start building, stay connected, and never forget, we are all members of one body.You'll Hear How They:· Expose the financial traps that keep high-earning physicians living paycheck-to-paycheck and overworking· Reveal why every single guest this season has a “side gig” — and why that's now a survival strategy· Break down the shift from physician-owned democratic groups to corporate medicine (and what we lost)· Show how one med-spa became a hedge against burnout and a reclaiming of professional autonomy· Prove that culture change happens in 10-minute handoffs and cross-specialty happy hours, not just policy memos· Issue a call for physician unity, leadership, and using your voice before you end up “on the menu”About the Guest“Just because I was born a man doesn't mean I'm better than anybody else.” — Dr. Mehrdad SoleimaniDr. Mehrdad Soleimani is a board-certified emergency physician, Assistant Director of the Emergency Department at Temecula Valley Hospital, and Chair of the hospital's Physician Wellness Committee. A former critical-care nurse, general surgery resident, proud girl-dad of three, and co-owner/medical director of NeoMed Spa, Mehrdad brings a rare blend of clinical expertise, emotional intelligence, and lived experience as an immigrant to his passionate advocacy for physician wellness and gender equity.Website: https://neomedicalspa.comResources + Mentions· NEOMD Spa – https://neomedicalspa.com· Financial wellness as a pillar of physician well-being· Visible Voices podcast with Dr. Risa Lavizzo-Mourey (“Use your voice”)· Persianpoetry: “Human beings are members of a whole…”Top 3 Key TakeawaysFinancial wellness is physician wellness : Stop the “just pick up one more shift” cycle and build something that gives you passive income and freedom.We gave away control of our profession: if you want autonomy back, you have to own something (a practice, a business, a voice at the table).Culture is built in the small moments: A thoughtful handoff, a happy hour with ortho, inviting the security guard to break bread , these are the ripples that change everything.
2025 was a year of transformative change and opportunity across the patient advocacy community, Sanofi, and for patients. In this special year-end episode, host Eric Racine, joined by Adam Gluck, Head of U.S. & Global Specialty Care Corporate Affairs, and all Sanofi Season 2 co-hosts, revisit the most powerful conversations and lessons from the 2025 season while exploring the year's defining theme, transformation. We are living through an unprecedented moment where sweeping shifts in healthcare policy, groundbreaking AI capabilities, and breakthrough scientific advances are unfolding at the same time, creating both extraordinary opportunity and profound responsibility to ensure these developments truly improve patients' lives. Eric and the team surface insights on how patient advocacy organizations and Sanofi are rising up to meet this incredible moment. Together they recall key lessons from advocacy leaders across immunology, lung health, vaccines, mental health, rare diseases, maternal health, and more. Learn how collaboration, co-creation, and patient integration can help organizations transform capabilities and deliver more impact for patients.In this episode, you'll gain insights to:Uncover transformation opportunities during this time of rapid shifts in healthcare, policy, technology, and scienceAdapt new tools and engagement models to better meet the needs of patient communitiesScale community-centered programs creatively, from helplines to peer networks and proactive outreachStrengthen collaborations across advocacy groups, policymakers, and industry to drive meaningful changeAccelerate the “last mile” between scientific breakthroughs and real-world patient accessEmbrace continuous learning and mindset shifts that are essential for organizational transformation that delivers resultsAs we close out the year, we're grateful to every patient advocacy leader whose insights helped us renew our commitments and elevate our performance for patients moving forward into 2026. Looking ahead, the pace of change will only accelerate, but so will our collective ability to anticipate and respond, guided by the advocates who inspire and inform this work. We're excited to build on this momentum next season with new conversations, fresh discoveries, and more lessons that move us closer to a healthcare system that truly works for every patient.
What does a man raised in a country where women are legally second-class citizens become one of the strongest male allies in American medicine?In Part 1 of this two-part Echo Episode, Dr. Mehrdad Soleimani pulls back the curtain on his improbable journey: fleeing Iran at 16, putting himself through nursing school as a first-generation immigrant, defending his female nursing colleagues from an abusive surgeon and then deciding that very night to become a doctor, switching specialties mid-residency, and ultimately landing in emergency medicine, where he now champions wellness, debriefing, and the “human factor.”Mehrdad and Andrea explore why stoicism and perfectionism are killing physicians, why it's actually strength (not weakness) to feel deeply in the resuscitation room, and how small acts of allyship, from checking in on a new female colleague to calling consultants on her behalf, change culture one shift at a time. This episode is a love letter to every physician humanity and a masterclass in what authentic male allyship feels like on the ground.You'll Hear How They:Trace the roots of fierce gender-equity beliefs to a mother who refused to accept second-class status in IranReveal the night a cardiothoracic surgeon's tantrum pushed a male ICU nurse to apply to medical schoolDiscuss why switching residencies even after years invested, can be the bravest and best career decision Unpack the hidden curriculum of medicine: stoicism, perfectionism, and competition, and why it's failing usChampion debriefing, emotional processing, and the power of the “feeling doctor” who still gets the job done Model everyday allyship that makes women physicians feel seen, supported, and safer in the workplaceAbout the Guest“Just because I was born a man doesn't mean I'm better than anybody else.” — Dr. Mehrdad SoleimaniDr. Mehrdad Soleimani is a board-certified emergency physician, Assistant Director of the Emergency Department at Temecula Valley Hospital, and Chair of the hospital's Physician Wellness Committee. A former critical-care nurse, general surgery resident, proud girl-dad of three, and co-owner/medical director of NeoMed Spa, Mehrdad brings a rare blend of clinical expertise, emotional intelligence, and lived experience as an immigrant to his passionate advocacy for physician wellness and gender equity.Website: https://neomedicalspa.comResources + Mentions・ Debriefing after critical cases (including pediatric codes)・ Hidden curriculum of medicine: stoicism, perfectionism, competition・ Emotional regulation vs. emotional suppression・ The power of 45-second empathy moments with patientsTop 3 Key TakeawaysAllyship isn't a poster, it's action: Checking in, offering to call consultants, making new colleagues feel welcome, and using your privilege to smooth someone else's path.Feeling deeply is not weakness, it's strength: The best physicians are “feeling doctors” who process emotion, debrief, and still lead the code with clarity.Your career is allowed to evolve: Switching specialties even years in, is not failure; it's choosing a life where you wake up excited to go to work.
Parker LaCombe is a passionate advocate, strategist, and internationally recognized subject matter expert in mental health, peer support, and systems transformation. As the co-founder of MindCareConnect and firm believer that recovery is possible for all who navigate mental health and substance use challenges, Parker uses her lived experience to bridge the gap between clinical and peer perspectives—co-creating more inclusive, trauma-informed, and human-centered systems of care. Her contributions have been recognized nationally and internationally, earning her the 2024 STAR Peer Support Worker of the Year Award from SAMHSA and recognition as a Rising Star in the 2018 National Lifesavers newsletter by the American Foundation for Suicide Prevention. Parker continues to champion stigma reduction, workforce equity, and peer leadership in mental health and suicide prevention efforts across the globe. Sydney Harris is an international mental health strategist with over 15 years of experience across public and private sectors, dedicated to transforming care into models that are person-centered, accessible, and holistic. She has led major initiatives including the Austin State Hospital Redesign and cross-sector collaborations addressing the intersections of mental health crises, homelessness, and the justice system. Sydney is the co-editor of Redesigning the U.S. Mental Health Care System (Oxford University Press), contributing two chapters to the volume, and the recipient of the prestigious George Pressler Under 40 Award recognizing leadership and vision in healthcare planning, design, construction, and operations. She is the co-founder of MindCareConnect, which elevates lived experience to shape mental health policy and innovation, and is currently pursuing a Doctorate in Public Health at Johns Hopkins University. MindCareConnect Website: https://www.mindcareconnect.org/
What happens when your childhood calling collides with a system that limits your capacity to live it out?In this Echo Episode, Dr. Maria Sturchler shares her extraordinary journey from first-generation college student to educator to medical student, years after being told she “wouldn't make it” in medicine. Now double board-certified in Emergency Medicine and Palliative Care, Maria reveals how serendipity, mentorship, and resilience brought her back to her original dream on her own terms.She and Andrea unpack the realities pushing talented clinicians out of traditional EM practice: night shifts, moral injury, violence in the ED, corporate interference, loss of autonomy, and the identity crisis that comes with stepping away. Maria gives voice to the hidden grief, burnout, and shame physicians carry when “the path” no longer fits.But this is not a story of defeat. Maria now leads an innovative palliative care model embedded inside the emergency department, freeing EM physicians from burdens that don't belong to them, reducing patient suffering, and restoring meaning to clinical work. Her message is equal parts invitation and disruption: medicine is not a prison. It's a “choose-your-own-adventure” and there are more off-ramps, pivots, and second chances than most physicians believe.You'll Hear How They:Reframe imposter syndrome and harmful feedback that derails dreamsNavigate grief when an identity built on EM no longer aligns with personal well-beingDescribe the hidden toll of EM: disrupted circadian rhythm, motherhood challenges, pandemic trauma, and corporate shiftsIntegrate palliative care inside the ED, reducing length of stay, improving communication, and radically supporting EM physiciansUse mentorship, self-inquiry, and values alignment to identify career pivots About the Guest“Medicine is choose-your-own-adventure.” — Dr. Maria SturchlerDr. Maria Sturchler is a dual board-certified physician in Emergency Medicine and Palliative Care, a three-time Ironman competitor, and a former mathematics educator whose doctoral work examined gender disparities in STEM. After being discouraged from medicine early on, serendipity and mentorship led her back to her calling. Today, she helps patients, families, and clinici'hat integrate palliative medicine directly into emergency care.LinkedIn: linkedin.com/in/mariasturchlerWebsite: sturchlermd.comResources + MentionsUnlocking Us podcast — Brené BrownBring 'Em All In (referenced EM mantra)Multidisciplinary collaboration models in palliative and acute careTop 3 Key TakeawaysCareer paths are not linear—nor should they be: Your training is a foundation, not a life sentence. EM skills travel well into palliative care, leadership roles, education, coaching, and hybrid models that better honor your values.Boundaries are not betrayal—they are survival: Choosing your health, family, sleep, identity, and emotional bandwidth is not weakness. It is wisdom. Physicians cannot sustain compassion without protecting their humanity.The future belongs to systems that humanize care: Embedded palliative programs, interdisciplinary partnerships, and values-based innovations reduce burnout, shorten ED holds, and restore dignity to medicine—one conversation at a time.
What happens when you combine a lifetime of service, leadership, and a deep desire to uplift others?In this inspiring episode, Dr. Andrea Austin welcomes Paula Drivas, as she shares how her changemaking story started at age 13 as a candy striper in Queens and how a simple request to transfer to the emergency department shaped her life's purpose. She walks listeners through an expansive 33-year career spanning emergency medicine, internal medicine, orthopedics, urgent care, academia, and leadership, culminating in her transition into coaching and medical administration.This conversation honors the evolution of medicine over three decades, from the loss of autonomy to intensifying metrics, and how Paula found her own path by listening to her heart, embracing spontaneity, and pursuing an MBA to impact healthcare at a systems level.A pivotal moment arrived when Paula experienced coaching for the first time during the pandemic, sparking an “aha” that shifted everything. She describes how coaching unlocked clarity she didn't know she needed and how it inspired her to create the Provider Coach Project to offer free access to coaching for medical students, PA students, nurses, residents, and clinicians.The episode explores the urgent need for coaching in medicine, the role of value work, the emotional toll of modern healthcare, the DISC assessment as a tool for team growth, and why no one should have to navigate a healthcare career alone.This is a deeply human, energizing conversation about purpose, service, and building a future where every healthcare professional feels supported and empowered.You'll Hear How They:Recognize changemaking moments early and follow them Navigate a nonlinear healthcare career with courage and openness Balance patient care with leadership, business demands, and personal growth Use coaching to unlock self-awareness, purpose, and sustainable decision-making Challenge the financial barriers that keep trainees from accessing coaching Apply DISC assessment insights to strengthen teams and improve communication Address burnout, emotional labor, and the realities of emergency medicine Build new models of support for clinicians across all stages of training If you've ever questioned your next step, felt the weight of modern medicine, or wondered how coaching could shift your career, this episode is for you.About the Guest:“Follow your heart. Never say never. You don't know where life is going to take you.” – Paula DrivasPaula Drivas, PA-C, MBA is a Master Certified Physician Coach, seasoned emergency medicine PA, urgent care medical director, and founder of the Provider Coach Project, a nonprofit dedicated to reducing financial barriers to coaching for healthcare professionals and trainees.Over her 33-year career, Paula has practiced emergency medicine, internal medicine, urgent care, orthopedics, and medical education, and has served in multiple leadership roles. She holds an MBA and trained as a coach at the Physician Coaching Institute.Paula is passionate about empowerment, reflection, and helping clinicians reconnect to meaning and joy in their work.
I would very like to get a review from you. Please send a note to me. Thanks, Peter! like to much appreciate a review from you!! Thank you!What happens when the most powerful marketing tool—customer testimonials—is restricted by privacy laws and personal boundaries? Robin Malone, CEO of RJ Communications, pulls back the curtain and shares with host Peter Woolfolk the unique challenges healthcare brands face when trying to showcase real patient stories.With nearly three decades of experience in healthcare communications, Malone reveals how she's mastered the delicate art of building "trust bridges" between healthcare providers and potential patient advocates. "This can't be transactional," Malone emphasizes. "You have to build the kind of trust that takes time." Her approach focuses on finding what she calls the "loud voices in the room"—those patients already enthusiastic about sharing their experiences—rather than trying to convince reluctant individuals.The conversation explores the regulatory maze created by HIPAA laws that protect patient privacy while creating significant hurdles for marketers. Malone walks us through the multi-layered permission process required before a PR professional can even contact a potential patient advocate. She shares a fascinating case study where her team successfully reframed a pharmaceutical campaign to focus on patients' lives rather than their medical conditions, creating powerful advocacy without compromising privacy.For healthcare communicators, marketers, and PR professionals working in regulated industries, this episode offers invaluable insights into building authentic advocacy programs that respect both legal boundaries and personal comfort levels. Malone's hard-earned wisdom demonstrates that the most compelling healthcare stories come from advocates who genuinely want to share—never from those who've been persuaded against their better judgment.Have you encountered similar challenges in your industry? We'd love to hear your experiences with navigating regulatory hurdles while trying to showcase authentic customer stories. Information on NEW podcast website.Support the showNewsletter link: https://www.publicrelationsreviewpodcast.com
Send us a textThe original roundtable has three segments. Surfing the MASH Tsunami is preempting the third segment, which will be posted next week, to share our co-hosts' reactions to the positivity and energy they felt from a group of empowered SLD advocates. Immediately after the roundtable, Louise suggested to Roger that they record a separate conversation sharing their reactions to what they had just witnessed. They turned the recording equipment on and resumed their conversation.Roger starts by noting that this is the first SurfingMASH episode comprised entirely of patient advocates at a moment when advocates felt empowered and optimistic. (Also, the Fellows were the first advocates to appear on SurfingMASH who are not part of the Advocate KOL community.)For Louise, her overpowering reaction is to the passion, because passion breeds energy and empowerment. She notes that the SLD advocates came from an array of liver-related backgrounds and from HIV, the original sources of truly empowered patients some 30 years ago. Roger shares two thoughts. As he listened to the roundtable, he recalled earlier episodes, some four to five years ago, when it seemed that the physician KOL community was not in sync with the patient advocates' goals and needs. Continuing along this train of thought, he discusses the shift in identity from “MASH patient” to “person living with MASH.” To Roger, the term "MASH patient" suggests a person defined by the disease, whereas the term "patient living with MASH" empowers individual patients to manage the disease and its place in their lives in whatever way they choose. The advocates, he says, choose to learn and speak out confidently. During the roundtable, Elena mentioned Úna Keightly, a Harrison Fellow from Ireland, who spoke from the floor at Paris MASH to request that patients learn about the outcomes of the trials in which they participate, whether the outcome is deemed a success or a failure. For the "MASH patient," a failed trial feels like a personal failure, but for a "person living the MASH," even the failed trial becomes an opportunity to learn about the disease and contribute to a long-term solution. Louise mentions a comment from Harrison Fellow Pam Miller about her cardiologist giving her a potentially hepatotoxic medication without considering Pam's liver status. This reminded both Louise and Roger of a comment former Global Liver Institute President Donna Cryer made years ago to the effect of "it doesn't matter what kills me. If I'm dead, I'm dead." From here, the conversation shifts to other changes in disease description Louise and Roger foresee:Describing the disease itself in more accessible terms, such as "liver stiffness" vs. "fibrosis level."Increasing the groups of attendees at events to include not only patients, but also the APPs who will provide much of the actual patient-level care.Educating those who still mischaracterize MASLD as “a bit of fat” that requires no action. Focusing more attention on post-menopausal women, who Louise notes are most likely to exhibit advanced SLD and cirrhosis. Being more sensitive to issues that drive changes in patients' quality of life, which might be the impact of hepatic encephalopathy, but might also relate to lean mass wasting with incretin agonists. Both foresee a growing “army” of advocates that can drive earlier detection, smarter trial design, and better everyday care. They cite some specific examples from the Fellows in the roundtable and others from their own life experiences.Ultimately, Louise and Roger share their belief that this program is an excellent tribute to Stephen Harrison, who strongly believed in the importance of patient advocates and the messages they convey.
According to the American Cancer Society, approximately one in eight men will be diagnosed with a prostate condition during their lifetime. Focused ultrasound offers a noninvasive, radiation-free treatment option for prostate conditions and has been approved in more than 50 countries, including the United States. In this episode of Curing with Sound, we explore focused ultrasound for prostate cancer through the lens of a patient and a patient advocate. Bob Palmer, who underwent the TULSA-PRO procedure—a minimally invasive, incision-free focused ultrasound treatment—discusses his decision-making process and treatment experience. He is joined by Eve Satterthwaite, a registered nurse and patient educator at Profound Medical. She provides an overview of what patients can expect from the procedure and her role in guiding them through treatment. Bob shares how Eve helped him evaluate treatment options after his prostate cancer diagnosis and what led him to choose focused ultrasound, particularly in light of potential side effects associated with surgery and radiation. Eve explains how she helps patients understand their options, outlines the clinical benefits of the TULSA procedure, and addresses common patient concerns. Discussion highlights: Modern Prostate Treatment Options – An overview of the TULSA-PRO procedure, an FDA-approved focused ultrasound treatment that offers an incision-free alternative to traditional prostate cancer treatments, with minimal downtime and reduced risk of side effects affecting quality of life. Informed Choices Through Education – Insights into how clear, comprehensive information about available treatments can help patients make confident, well-informed decisions. All patient stories featured on the Curing with Sound podcast are personal accounts of an individual's experience with focused ultrasound treatment. Please be aware that each patient's situation is unique, and outcomes may vary. The information provided in this story should not be considered as medical advice or a guarantee of specific results. It is important to consult with a qualified healthcare provider to discuss your condition and determine the best treatment options for you. The Focused Ultrasound Foundation does not endorse any specific treatment or medical procedure and encourages all patients to seek professional medical guidance tailored to their individual needs. Visit TULSAprocedure.com for more information EPISODE TRANSCRIPT ---------------------------- QUESTIONS? Email podcast@fusfoundation.org if you have a question or comment about the show, or if you would you like to connect about future guest appearances. Email info@fusfoundation.org if you have questions about focused ultrasound or the Foundation. FUSF SOCIAL MEDIA LinkedIn X Facebook Instagram TikTok YouTube FUSF WEBSITE https://www.fusfoundation.org SIGN UP FOR OUR FREE NEWSLETTER https://www.fusfoundation.org/newsletter-signup/ READ THE LATEST NEWSLETTER https://www.fusfoundation.org/the-foundation/news-media/newsletter/ DOWNLOAD "THE TUMOR" BY JOHN GRISHAM (FREE E-BOOK) https://www.fusfoundation.org/read-the-tumor-by-john-grisham/
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
After hours clinics are being hailed by the government as a solution to over-stretched and under-pressure emergency departments. But while the government unveiled it's plan to spend 164 million on expanding the clinics - there was no detail on how much it would cost patients using the services. Checkpoint has spoken to one woman who's after hours clinic visit in Palmerston North cost her $260. Jimmy Ellingham reports.
This weekend's Newsmaker, Fatty Liver Alliance Founder Mike Betel, joins Roger Green to discuss the wide range of conferences where he has been invited to speak or sit on a panel this year. Specifically, he shares his belief on what this says about interest in MASLD and describes the messages he delivers at the conferences he attends. The interview starts with Roger asking about the benefits societies and the broader community get from having Mike at these programs. As he puts it, "I feel quite fortunate that I get to be, as you've shared before, the one sitting in the front row center, paying very close attention to every word that the speakers are saying so that I can share it back as it's happening." The posts he sends back from these meetings are well-received, with many reaching a 30% engagement rate and some exceeding 50%. He has been struck by the breadth of the organizations seeking to learn more about the liver and MASLD. The conference that struck him most in the last six months was the American Diabetes Association meeting, where only two MASLD KOLs spoke. Still, there was tremendous interest in MASLD throughout the conference. His key takeaway from the new conferences he attends, many of which are about diabetes or obesity, is how important it is for physicians to be sensitive in the language they use and, generally, the level of interest/empathy they show their patients. He believes this will be particularly important for front-line treaters, many of whom must fit this new, more open approach into an 8-minute visit.Mike's most important message is about "tailored therapy," therapeutic approaches sensitive not only to the patient's disease but also their life circumstances. An example he gives: taking 10,000 steps per day may not be feasible for a person living with obesity who is starting therapy, so why make that number the goal?Mike's final message to patients is to ask lots of questions, particularly about the comorbidities or test results that might suggest potential for future problems.
"I think that the general public thinks that health care is just expensive and this is just the way it has to be. It doesn't. And I think if more people knew that they would rise up and fight the system, fight for change.” - Jenni Nolan Jenni Nolan, Board-Certified Patient Advocate at Clear Healthcare Advocacy, joined me this week to discuss the need for more patient advocacy in America, and how she goes about negotiating medical bills with hospitals, on the behalf of patients. The number one thing we need in this industry as a whole is more consumer education. As Jenni shares, many people will get a huge hospital bill and assume that the only option they have is to go into a huge amount of debt. The emergence of patient advocates has helped so many across the country get their bills corrected/lowered, and Jenni and I discussed the sector as a whole and what the future looks like for medical billing in this country. Chapters: 00:00:00 Meet Jenni Nolan 00:03:23 Advocating For Patients 00:10:01 Correcting Healthcare Billing Mistakes 00:15:39 Understanding Medical Billing 00:23:05 Healthcare Costs' Long-Term Financial Impact 00:29:36 Negotiating Fair Hospital Bills 00:32:09 Fair Hospital Billing Rate Negotiations 00:48:11 Navigating Healthcare As A Consumer 00:53:41 Empowering Individuals through Healthcare Education Key Links for Social: @SelfFunded on YouTube for video versions of the podcast and much more - https://www.youtube.com/@SelfFunded Listen on Spotify - https://open.spotify.com/show/1TjmrMrkIj0qSmlwAIevKA?si=068a389925474f02 Listen on Apple Podcasts - https://podcasts.apple.com/us/podcast/self-funded-with-spencer/id1566182286 Follow Spencer on LinkedIn - https://www.linkedin.com/in/spencer-smith-self-funded/ Follow Spencer on Instagram - https://www.instagram.com/selffundedwithspencer/ Key Words: Patient Advocacy, Medical Billing, advocate, advocacy, Billing, errors, Hospital Bills, medical bills, Transparency, affordable healthcare, Patient Advocates, Healthcare Literacy, Hospital Billing, Education, Fair Healthcare, podcast, benefits, health, healthcare, health insurance, self funded, self funding #PatientAdvocacy #MedicalBilling #advocate #advocacy #Billing #errors #HospitalBills #medicalbills #Transparency #affordablehealthcare #PatientAdvocates #HealthcareLiteracy #HospitalBilling #Education #FairHealthcare #podcast #benefits #health #healthcare #healthinsurance #selffunded #selffunding --- Support this podcast: https://podcasters.spotify.com/pod/show/spencer-harlan-smith/support
"I think that the general public thinks that health care is just expensive and this is just the way it has to be. It doesn't. And I think if more people knew that they would rise up and fight the system, fight for change.” - Jenni Nolan Jenni Nolan, Board-Certified Patient Advocate at Clear Healthcare Advocacy, joined me this week to discuss the need for more patient advocacy in America, and how she goes about negotiating medical bills with hospitals, on the behalf of patients. The number one thing we need in this industry as a whole is more consumer education. As Jenni shares, many people will get a huge hospital bill and assume that the only option they have is to go into a huge amount of debt. The emergence of patient advocates has helped so many across the country get their bills corrected/lowered, and Jenni and I discussed the sector as a whole and what the future looks like for medical billing in this country. Chapters: 00:00:00 Meet Jenni Nolan 00:03:23 Advocating For Patients 00:10:01 Correcting Healthcare Billing Mistakes 00:15:39 Understanding Medical Billing 00:23:05 Healthcare Costs' Long-Term Financial Impact 00:29:36 Negotiating Fair Hospital Bills 00:32:09 Fair Hospital Billing Rate Negotiations 00:48:11 Navigating Healthcare As A Consumer 00:53:41 Empowering Individuals through Healthcare Education Key Links for Social: @SelfFunded on YouTube for video versions of the podcast and much more - https://www.youtube.com/@SelfFunded Listen on Spotify - https://open.spotify.com/show/1TjmrMrkIj0qSmlwAIevKA?si=068a389925474f02 Listen on Apple Podcasts - https://podcasts.apple.com/us/podcast/self-funded-with-spencer/id1566182286 Follow Spencer on LinkedIn - https://www.linkedin.com/in/spencer-smith-self-funded/ Follow Spencer on Instagram - https://www.instagram.com/selffundedwithspencer/ Key Words: Patient Advocacy, Medical Billing, advocate, advocacy, Billing, errors, Hospital Bills, medical bills, Transparency, affordable healthcare, Patient Advocates, Healthcare Literacy, Hospital Billing, Education, Fair Healthcare, podcast, benefits, health, healthcare, health insurance, self funded, self funding #PatientAdvocacy #MedicalBilling #advocate #advocacy #Billing #errors #HospitalBills #medicalbills #Transparency #affordablehealthcare #PatientAdvocates #HealthcareLiteracy #HospitalBilling #Education #FairHealthcare #podcast #benefits #health #healthcare #healthinsurance #selffunded #selffunding --- Support this podcast: https://podcasters.spotify.com/pod/show/spencer-harlan-smith/support
On today's Justice Team Podcast, we host Greg Staudenberg, an innovator in the medical imaging space. Greg discusses his work with Invigorate, a company set to transform medical diagnostics for both healthcare and legal applications. Discover how their new CT technology provides highly detailed 3D images in just one minute, surpassing traditional MRI scans and improving case outcomes for personal injury lawyers.
We've got two brilliant guests today! Katie Marovitch and Kale Hills join us for some improvised hilarity through scenes about bad pot lucks, new personas via halloween costumes, Penis (the cool new store in the mall), labor/pepperoni issues at Sbarro, and much more! Thanks as always for listening and supporting! Katie on IG - Katie on TikTok Kale on IG - Pony at UCB Subscribe to ManDog on YouTube! Check out BigGrandeWebsite.com! Subscribe to Big Grande on Youtube! Eat Pray Dunk and Hey Randy on CBB World! The Greatest Conversation Ever YT! - Yes, Also YT!
Patient Advocates play a crucial role in the pharmaceutical industry, especially in clinical research. They serve as the voice of patients, ensuring their needs and concerns are addressed throughout the drug development process. Here's a simple breakdown of their contributions and when their involvement might not be ideal.Why Are Patient Advocates Important?1. Improving Clinical Trial Design: Patient Advocates provide valuable insights into patient experiences and needs. Their feedback helps researchers design more patient-friendly clinical trials, leading to higher participation rates and more reliable results.2. Bridging the Gap: They help bridge the communication gap between pharmaceutical companies and patients. By ensuring clear and understandable communication, they aid in better recruitment and retention of patients in clinical trials.3. Ensuring Transparency: Advocates promote transparency and trust by fully informing patients about the trials, including the risks and benefits. This transparency builds trust and encourages more patients to participate.When Might Patient Advocates Not Be the Best Choice?1. Overcomplicating Simple Studies: In straightforward clinical trials, involving Patient Advocates can add unnecessary complexity. For very clear protocols, this additional layer might slow down the process without adding significant value.2. Misalignment of Goals: Sometimes, the goals of Patient Advocates and pharmaceutical companies may not align perfectly. If Advocates push for changes that conflict with the scientific or regulatory goals of the study, it can create conflicts and delay research.3. Limited Expertise in Specialized Areas: In highly technical or specialized areas, Patient Advocates may lack the necessary expertise to contribute meaningfully. For example, in rare disease states or cutting-edge technologies, the required insights may be highly technical and specific, beyond the scope of patient advocate knowledge.While Patient Advocates are invaluable in many aspects of clinical research, their involvement should be carefully considered based on the study's complexity and specific needs. Proper alignment and clear communication between all parties can help maximize the benefits of involving Patient Advocates.Support the show
In this episode, we delved into the pivotal role of patient advocates within the pharmaceutical industry. Patient advocates are champions who ensure that patients' voices are not only heard but also central to decisions affecting their health. They play a crucial role in various aspects:Firstly, patient advocates are instrumental in representing the patient voice in clinical trials. By advocating for patient-centric endpoints and highlighting symptoms that matter most to patients, they help ensure that trials are not only rigorous but also relevant to real patient needs.Secondly, these advocates support the development and adoption of innovative drugs. They identify gaps in treatment options and advocate for the development of drugs that address unmet medical needs. By collaborating with pharmaceutical companies and healthcare providers, they advocate for the adoption of these drugs to improve patient outcomes.Thirdly, patient advocates work tirelessly to ensure access to medications. They advocate for policies and practices that remove barriers to medication access, such as affordability and availability issues. By engaging with policymakers, healthcare providers, and the public, they strive to make sure that every patient can obtain the medications they need without undue hardship.Moreover, patient advocates play a crucial role in healthcare decision-making processes. They participate in meetings with drug companies, hospitals, regulatory bodies, and government agencies to ensure that patient perspectives are considered in policy-making and healthcare delivery.For those interested in becoming patient advocates, we discussed practical steps such as educating oneself on healthcare systems, clinical trials, and specific health issues, joining patient advocacy groups, attending conferences and workshops, volunteering, and sharing personal experiences to raise awareness.In conclusion, patient advocates are instrumental in shaping a healthcare system that truly serves patients' needs. Their advocacy ensures that healthcare decisions are informed by patient experiences and priorities, ultimately leading to more effective, patient-centered care.Support the Show.
In this week's episode, Jeff Lazarus discusses the idea that the MASH community, including patient advocates, live in a "bit of a bubble," where the clinicians with whom they interact are part of the MASH community. Last year's ICER Public Comments session exposed them to an FDA Advisory Board of hepatologists...and it was a very different experience. Last year's conversation notes reveal what happened and the advocates' reactions:In March 2023, Jeff McIntyre (GLI) introduced a draft report from the Institute for Clinical and Economic Review (ICER) on resmetirom and obeticholic acid for NASH. The Surfers dedicated an episode to expand on the contents, its shortcomings and potential implications with special guests Veronica Miller (Liver Forum) and Hannah Mamuszka (Alva10). In this conversation, SurfingMASH revisits the topic after a public comments session that took place last week. In doing so, patient advocates and friends of the podcast Mike Betel (Fatty Liver Alliance), Tony Villiotti (NASHkNOWledge) and Wayne Eskridge (Fatty Liver Foundation) join co-hosts Louise Campbell and Roger Green to share a range of impressions.Roger begins by asking the group how the word empathy fits into this discussion. Tony shares that he was upset by the majority viewpoint of 15 featured voting members on a number of different issues. For example, 40% of these voting members suggested that a drug approval would have no impact on a caregiver's life. Tony asserts the importance behind people needing to be aware of the impact of NAFLD/NASH not only on the patient, but also the families and those close to them. Speaking from personal experience, Wayne shares that he was perplexed on the document's position that NAFLD/NASH is not considered to be a progressive disease. This leads Louise and Roger to insert comments around the pricing and economic analysis surrounding the discussion. As the conversation winds down, Mike returns to the conundrum of the voting results. Listen on to hear why his reaction was, “I literally fell out of my chair.”
Michael and Maddison are industry disruptors. They are known for the part they played in the Daniel Lanzer case, and have moved into the non-surgical cosmetic space.They are pushing for tighter regulations around advertising within the cosmetic arena as they view what is advertised as unethical and this in turn will cause patient harm.On this I agree that some have been doing the wrong thing, however, most of the practitioners only do the right thing by their patients and enhance their lives through self image improvement.This is an interesting podcast and gives you good for thought.Support the show: https://www.patreon.com/tendernessnursesSee omnystudio.com/listener for privacy information.
Inside EMS cohosts Chris Cebollero and Kelly Grayson delve into a legal case out of New Jersey in this week's episode, in which law enforcement officers and EMS providers were recently charged with the in-custody, in-ambulance death of a patient under the influence of bath salts. The discussion also discusses a similar incident out of Colorado in which two paramedics and a police officer were convicted in the 2019 death of Elijah McClain after he was injected with ketamine. Chris and Kelly share vulnerable moments from their careers when they regret not advocating for their patient in the face of law enforcement actions, plus we dig into all this: The growing legal scrutiny of EMS practices How to use de-escalation techniques to mitigate contentious situations with law enforcement partners The ethical responsibilities of EMS providers This episode of the Inside EMS Podcast is sponsored by LogRx. Learn a better way to track your narcotics at LogRx.com.
Patient advocates, Pharma funding, and is MRD a suitable endpoint
This conversation focuses on how the role of MASLD patient advocates might change and expand in the aftermath of Rezdiffra being approved. To Wayne Eskridge, this “raises an entirely new field of education and outreach,” because now advocates can do more than merely be supportive emotionally. Advocates can, quoting again, “refresh our message and have broader perspectives and share a more hopeful outlook to the future” and talk about clinical trial participation and other drugs coming down the line. Also, he notes that advocates can provide the education to bring new patients into the system and help deliver the information providers will need to know in order to treat them. Jeff McIntyre adds that this will raise a new set of questions for advocates to ask companies and the healthcare system in terms of support for patients with cirrhosis, more patient-friendly dosing, reimbursement…a range of issues. Roger Green shifts focus to ask how advocates can help slow the flow of patients into the system by reducing the rate of MASLD growth. Tony Villiotti says education is key and notes how NASH kNOWledge starts by educating children. Jenn Jones adds that education and promotion can give hope to patients with alcohol-related liver disease and those with the new category MetALD. She also notes that the label gives advocates new leverage to stress the importance of nutrition and physical activity.
So far, this conversation has focused on Rezdiffra approval and its many forms of impact on MASLD patient advocates. This conversation considers their recommendation for others. The conversation starts with Roger Green's final question. He asks each panelist to identify a stakeholder group that can take a valuable lesson from this episode and what that lesson should be. Wayne Eskridge goes first. Wayne focuses on the need for Madrigal and the various professional societies to increase education and information support for the gastrointestinal community. Mike Betel and Jenn Jones hope the Rezdiffra approval will lead to greater research investment and a broader, deeper focus for their investments. Louise Campbell returns to the need for provider education, this time for medical nursing and allied health professionals. She also believes organizations need to recruit greater nursing capacity. Jeff McIntyre asserts that if nutrition and physical activity are critical adjuncts to drug therapy, the entire healthcare community needs to advocate for access and reimbursement to dieticians, physical therapists, exercise specialists, and other supportive professionals. Tony Villiotti returns once more to education, mentioning the need to increase scale. He also discusses some specific topics that will merit more focus. Finally, Roger Green discusses two different forms of optimism: optimism among patients that they can be treated and, separately, optimism among investors that increasing the scale and scope of their investments will provide good returns.
Last Thursday, March 14, Rezdiffra (resmetirom) became the first drug approved in the US for MASH. Five leading North American MASLD patient advocates join the Surfers to discuss their feelings about this approval along with the opportunities and challenges that lie ahead.00:00:00 - Surf's Up: Season 5 Episode 7Opening introduction from an excited, enthusiastic panel, including brief quotes taken directly from the episode discussion.00:05:55 - GroundbreakersEach panelist shares one piece of good news from the previous week.00:11:19 - Advocates recall March 14As March 14 progressed, advocates' attitudes moved from excited anticipation to anxiety to deep happiness. 00:17:41 - Advocates describe their feelings as patientsNone of these advocates are Rezdiffra candidates themselves, but each reflected on their personal experiences with MASLD and what the future holds for patients who are or will be candidates for Rezdiffra.00:22:33 - Identifying target patientsThis conversation starts with Roger Green asking the group to describe where the number "315,000 target patients" came from. After the group replies, Jeff McIntyre and Louise Campbell explain how this is different from a "warehoused" patient population, and Wayne Eskridge discusses the exciting, progressive Madrigal patient support program.00:29:53 - The advocate's role todayJeff begins this discussion by emphasizing the role GLI has shepherded and advocates have played in informing FDA about patients' key concerns for the label. He describes how these are reflected in the approval decision and label, with biopsy being the most obvious example. The other advocates agree, with Mike Betel emphasizing how closely the leading advocates co-ordinate with GLI and each other. Louise suggests it will be a "game changer" if FDA takes a similar view to labels for other metabolic diseases. Roger points to Madrigal's discussion of medical exception as proof of their commitment.00:37:10 - The advocate's role tomorrowAdvocates agree that this approval creates new, broader opportunities for education and outreach. To Jeff, the approval will allow advocates to ask bigger questions on emerging needs. He offers treatment for cirrhosis and drug reimbursement as two such areas. 00:41:22 - Slowing the patient flowRoger asks what steps advocates can take to slow the flow of patients through the progressive stages of MASLD. Tony Villiotti notes that this is the primary goal of NASH kNOWledge, starting with childhood education. Jenn Jones states that publicity about Rezdiffra may lead patients with MetALD or ALD to explore how they can protect their own livers and seek early detection. 00:46:15 - Overwhelming the systemLouise describes herself as "slightly fed up" at individuals who fear "overwhelming the system." Instead, she says, systems should build capacity to reflect the scale of the disease. Roger notes this may be harder to execute in the US than in countries where governments control their healthcare systems. Jeff points to the US Veterans Administration as a possible model for ways to build capacity. 00:52:21 - Emerging role of primary careLouise states that much treatment will shift to primary care over the next 5-7 years. Roger agrees and seconds Jeff's comments about the role the VA can play.00:54:55 - Closing question Roger asks each panelist to identify a healthcare stakeholder group that needs to take a lesson from the issues discussed today. Answers vary widely. 01:02:06 - Question of the WeekThe question asks what good ideas listeners have for other stakeholder groups in the aftermath of Rezdiffra's approval.01:02:54 - Business reportThis week's news on audience metrics, future episodes and why there will be no Vault conversation again this week
Christian Lillis, Co-Founder and CEO of the Peggy Lillis Foundation is a patient advocate in the fight against C. diff infection. Clostridium difficile is an opportunistic infection of the gut that often occurs after taking antibiotics and can lead to life-threatening complications. Christian shares his personal story of losing his mother to C. diff and highlights the progress made in raising awareness and the development of new treatments for the infection. The Peggy Lillis Foundation emphasizes the importance of patient voices in shaping infectious disease policies and research and the need for community support to fight C. diff and other preventable infectious diseases. Christian explains, "Last time we did our most recent C. diff awareness month campaign in November, it was our most successful one yet. We reached around 23 million people through a mix of earned, print, video, and podcast media and a strong social media campaign. We also had it bolstered by media partnerships with Contagion Live and Pharmacy Times. As part of our programming for the month, we held a virtual town hall, and about 200 people attended. More than half of them were C. diff patients, survivors, and family members." "Other progress was at the end of 2022, and then in early 2023, two new therapies. Technically, they are classified as preventative by the FDA, but they are basically microbiome restoration therapies. As I said earlier, when you take antibiotics, there can be other causes. Still, when your gut microbiome, gut bacteria, and viruses get out of whack or depleted, you become very vulnerable to C. diff. And a reason why people struggle to get over C. diff is because their gut microbiome remains degraded. So these new two therapies, one is done by enema, one is given by capsule over several days, it's a really huge change for people who are battling recurrent C. diff." #CDiff #PeggyLillisFoundation #ClostridiumDifficile #CDifficile #PatientAdvocacy #CdiffAwarenessMonth cdiff.org Download the transcript here
Christian Lillis, Co-Founder and CEO of the Peggy Lillis Foundation is a patient advocate in the fight against C. diff infection. Clostridium difficile is an opportunistic infection of the gut that often occurs after taking antibiotics and can lead to life-threatening complications. Christian shares his personal story of losing his mother to C. diff and highlights the progress made in raising awareness and the development of new treatments for the infection. The Peggy Lillis Foundation emphasizes the importance of patient voices in shaping infectious disease policies and research and the need for community support to fight C. diff and other preventable infectious diseases. Christian explains, "Last time we did our most recent C. diff awareness month campaign in November, it was our most successful one yet. We reached around 23 million people through a mix of earned, print, video, and podcast media and a strong social media campaign. We also had it bolstered by media partnerships with Contagion Live and Pharmacy Times. As part of our programming for the month, we held a virtual town hall, and about 200 people attended. More than half of them were C. diff patients, survivors, and family members." "Other progress was at the end of 2022, and then in early 2023, two new therapies. Technically, they are classified as preventative by the FDA, but they are basically microbiome restoration therapies. As I said earlier, when you take antibiotics, there can be other causes. Still, when your gut microbiome, gut bacteria, and viruses get out of whack or depleted, you become very vulnerable to C. diff. And a reason why people struggle to get over C. diff is because their gut microbiome remains degraded. So these new two therapies, one is done by enema, one is given by capsule over several days, it's a really huge change for people who are battling recurrent C. diff." #CDiff #PeggyLillisFoundation #ClostridiumDifficile #CDifficile #PatientAdvocacy #CdiffAwarenessMonth cdiff.org Listen to the podcast here
Leading MASLD patient advocates Jeff McIntyre (Global Liver Institute), Milan Mishkovikj (European Liver Patients Association), Tony Villiotti (NASH kNOWledge) and Wayne Eskridge (Fatty Liver Foundation) describe their respective organizations' priority 2024 MASH programs to co-hosts Louise Campbell and Roger Green. In this conversation, the advocates each describe their respective organizations' top project for 2024. Wayne Eskridge goes first, describing the Fatty Liver Foundation's annual "flagship" study, The State of NAFLD and NASH Care in America. This study, which has been going on for "a few years," surveys patients' experiences around diagnosis and treatment of their SLDs. This year, which increased focus on non-invasive testing and the anticipated availability of a MASH drug, should yield particularly interesting results. Tony Villiotti talks about the extensive "liver awareness" education work NASH kNOWledge is conducting with over 250 schools and community centers in the Pittsburgh area. As part of NASH kNOWledge's ongoing effort to communicate to children on their own level, Tony anticipates his 10-year-old grandson accompanying the team this year, dressed in a "Livvy the Liver" costume. Milan Mishkovikj discusses a program where ELPA leadership conducts liver screenings at the European Parliament in Brussels, which provides opportunities not only to teach legislators and executives about their liver disease but also to learn their own liver health status. Jeff McIntyre discusses GLI's Advanced Advocacy Academy, or A3, a program to create and educate liver health advocates across the globe. To use Jeff's phrase, the program is starting to "grow roots" and become a self-sustaining year-round activity. Louise Campbell notes that the common theme in all four programs is that they are patient-focused, and most are children-focused. Roger's final question is to ask what will constitute success for each organization over the next 12 months. The answers vary in specifics but carry the basic themes of education, access and drug approval common to the rest of the conversation.
00:00:00 Surf's Up: Season 5 Episode 2 Co-hosts Louise Campbell and Roger Green sit with four leading MASLD patient advocates (Tony Villiotti of NASH kNOWledge, Wayne Eskridge of the Fatty Liver Foundation, Jeff McIntyre of the Global Liver Institute, and Milan Mishkevikj of the European Liver Patients Association) to discuss their plans and actions for MASH patients in 2024. The discussion covers the advocates' hopes and concerns for the year and the programs and efforts each considers top priority. 00:04:09 Meet Milan MishkovikjNorth Macedonian patient advocate Mishkovikj, a key leader in the ELPA, discusses how he became involved in liver patient advocacy and shares one fact about himself that might surprise you. 00:11:25 Groundbreaker Panelists share one piece of good personal or professional news from the previous week. 00:15:52 Anticipating Pi DayEvery year, Pi Day is March 14. This year, that date has extra significance: the PDUFA Date for resmetirom approval at FDA. Advocates describe their "guarded optimism" regarding whether resmetirom will be approved. Wayne notes the potential for confusion and disappointment because not every patient who anticipates receiving the new drug will do so. Louise and Milan describe how US approval might affect their respective countries and regions. Jeff describes the extensive planning GLI is doing to prepare for a PDUFA decision that might raise as many questions as it answers, particularly around coding, reimbursement and definition of appropriate patients. He also describes a possible approval path for countries outside the US. 00:26:42 Post-Approval Planning As Jeff puts it, "We have to be planning for the second half while we're playing the first half on this," with essential questions about the implications of labeling on the topics he mentioned earlier. Roger asks what role patients might play in access decisions, to learn that the advocates have largely been "blocked out" of the process. GLI anticipates driving conversations with health systems around policies and access. The other US advocates do not anticipate doing so. Milan describes how ELPA will work with EMA, the European Parliament and other relevant groups. Louise adds private insurers and governmental payers to the critical post-launch lobbying and discussion targets.00:38:43 Where Does the Patient Fit? Roger asks where patients fit in the decision paradigms and how that might change over time. Louise shares her view that while patients might consume the medications, the real customer is either the prescriber or payer. Tony describes payers as "the last frontier" in learning how patients feel. Jeff returns to a range of "here and now" access issues GLI can address now. Milan and Roger discuss perspectives on the interplay of regulators, payers, providers and patients.00:49:13 Advocates' Key Programs Each advocate describes one key program they will run in 2024. Wayne describes FLF's State of NASH Care in America survey. Tony describes NASH kNOWledge's children's education programs. Milan describes continuing pilot programs ELPA started in 2023 to education the European Parliament. Jeff discusses GLI's Advanced Advocacy Academy, which "grew roots" worldwide in 2023. At different points earlier in the discussion, each advocate commended the support they get from GLI.00:56:30 Closing QuestionRoger asks what will tell each advocate whether they've been successful when they look back on 2024, 12 months from the recording date. Answers are powerful and vary by organization. 01:02:55 Business Report News on audience metrics, the upcoming Question of the Week, next week's nomenclature discussion and this week's Vault conversation.
In today's episode, part of our MBC webinar series, we delve into the San Antonio Breast Cancer Symposium (SABCS). We aim to break down the overwhelming amount of information into digestible insights. We discuss key findings, particularly on inflammatory breast cancer (IBC) and invasive lobular carcinoma (ILC), with insights from Amy Parliman, a member of our MBC leadership team.Amy highlights the advancements in technology that outpace current treatment options and the importance of recognizing the unique challenges of diagnosing IBC and ILC due to their imaging difficulties. She shares that the symposium acknowledged these challenges and that there's growing research focusing on the genomic mutations specific to these types of breast cancer.We also touch on the significance of patient-centric care, reminding listeners that they have the ultimate say in their treatment decisions. Amy shares her personal experience with her treatment regimen and the importance of sticking with what works unless there's a compelling reason to change.The episode also covers the potential of contrasted mammograms and the need for different types of PET-CT scans for accurate diagnosis. We stress the importance of being informed and advocating for oneself, as treatments can vary based on individual cancer properties.As always, we remind our listeners that the information shared is from personal experiences and not a substitute for professional medical advice. We encourage reaching out to your medical care team with any questions or concerns.00:02:46 - Dr. Mankoff's Research on Imaging Technology00:04:02 - Genomic Mutations in Different Breast Cancer Types00:04:34 - Clinical Trials and Research Timelines00:04:56 - Genes Implicated in Inflammatory Breast Cancer00:06:02 - Imaging Challenges with Lobular Breast Cancer00:07:07 - Amino Acid Studies and PET-CT Imaging00:09:19 - Personalized Treatment and Informed QuestionsAttend a free virtual SurvivingBreastCancer.org event:https://www.survivingbreastcancer.org/eventsSurvivingBreastCancer.org's Mission: To empower those diagnosed with breast cancer and their families from day one and beyond. Follow us on InstagramLaura and Will: https://www.instagram.com/laura_and_will/SurvivingBreastCancer.org: https://www.survivingbreastcancer.org/Breast Cancer Conversations: https://www.instagram.com/breastcancerconversations/About SurvivingBreastCancer.org: SurvivingBreastCancer.org, Inc. (SBC) is a federally recognized 501(c)(3) non-profit virtual platform headquartered in Boston with a national and global reach. Through education, community, and resources, SurvivingBreastCancer.org supports women and men going through breast cancer. We provide a sanctuary of strength, compassion, and empowerment, where those diagnosed with cancer unite to share their stories, learn invaluable coping strategies to manage wellness and mental health, and find solace in the unbreakable bond that fuels hope, resilience, and the courage to conquer adversity.Support the show
Eric Chase gets input and advice from EMS attorney Steve Wirth, Esq., EMT-P, after the guilty verdict of two Colorado paramedics that had been on trial for the homicide of Elijah McClain.
In observance of Alzheimer's Disease Awareness month, we sit down with patient advocate Kathi Herzog -- who was diagnosed with moderate Alzheimer's earlier this year. While not a rare condition, Alzheimer's research has informed the search for treatments in rare neurodegenerative conditions and Kathi's journey to diagosis will probably sound very familiar to the rare community. Kathi's husband, Dave, also joins us to talk about their journey together and why caregivers need support as well. If you'd to learn more about Alzheimer's Disease, check out the resources here. If you'd like to get in touch with Kathi, email her here: kathleenherzog4@gmail.com If you'd like to get in touch with Dave, email him here: daveherzog4@gmail.com Editor's Note: Chronic conditions and rare diseases don't discriminate. Patient Worthy and its partners are interested in amplifying the voices of those from all identities and backgrounds. If you have an Alzheimer's Disease journey to share, reach out here to learn more about how your voice can help spread awareness and inspire individuals from all walks of life.
In this episode of the podcast we discuss neuromyelitis optica spectrum disease (NMOSD), a rare autoimmune disease that effects central nervous system function and can result in symptoms such as pain, vision loss, limb weakness and numbness. Joining us are Dr. Maggie Kang and Nell Choi, mother and daughter patient advocates who talk about NMOSD and their experiences since Nell was diagnosed at a young age. To learn more about NMOSD go here: NMOSD at the National Organization for Rare Disorders You can pick up a copy of Nell's book here: My Hospital Story - Amazon Learn About Dr. Kang's work supporting the wellbeing of parents of children with rare conditions here: MaggieKangMD.com
November 7, 2023 - In advance of changes to how New Yorkers on Medicaid get re-certified for home care services they receive, Rebecca Antar Novick, health law unit direct for the Legal Aid Society, is urging the Hochul administration to slow down and rethink their plans.
On this Vital Health Podcast, Duane Schulthess has a conversation with Bettina Ryll, the founder of the Melanoma Patient Network Europe. Bettina is regarded as one of the world's leading Patient Advocates, who dedicated herself to advocacy after the death of her husband from cancer. While most patient representatives don't have a medical background, Bettina has a Ph.D. in Biomedical Sciences from University College London. From 2015 – 2018, Bettina chaired the ESMO Patient Advocates Working Group, which was the first time that position was held by a non-oncologist.See omnystudio.com/listener for privacy information.
In this eye-opening episode, I sit down with Patient Advocates Amanda Porta and Robyn Towt to have a much needed and detailed discussion about Breast Implant Illness.Both with remarkable stories and a passion for education, Amanda and Robynare on a prominent mission to spread truth among women across the world, in efforts to highlight the very real and COMMON happenings associated with breast implants.Amanda has worked in and throughout the beauty/plastic surgery industry for decades, and was ultimately inspired to pursue Holistic Health coaching. Now laser focused on guiding women with BII towards healing and optimal health, she has dedicated her life to redirecting the public's view on what health and beauty really entails. As someone who never saw critical or chronic health issues prior to implants, she's determined to use her voice and expose the darker sides of beauty procedures and the industry's dirty secrets.Robyn—now three-time cancer survivor—became co-founder of the Global Patient Advocacy Coalition (GPAC) and is also an administrator in various online support groups for women who are suffering from BII. She's worked extensively with Arizona legislators in passing an informed consent law for breast implant surgery, and the GPAC team has also partnered with the American Society of Plastic Surgeons (ASPS) to develop a patient decision checklist.With both of these women having experienced BII and explant surgeries, they know firsthand how real and truly life-altering these decisions can be. They believe every patient should be given the opportunity to make an educated and informed choice, and that means having ALL of the information, not just selected information.Amanda on Instagram: https://www.instagram.com/theholisticbeautycoach/Amanda's Lymph Website: https://www.lymphlounge.comRobyn on Instagram: https://www.instagram.com/robyntowt/Robyn on Facebook: https://www.facebook.com/robyn.towt.7GPAC Website: https://www.gpacunited.org/Show Instagram: https://www.instagram.com/well.with.vanessa/Vanessa Lopez on Instagram: https://www.instagram.com/thegiftofgoods/Vanessa's Linktree (Discounts etc.): https://linktr.ee/thegiftofgoodsEmail: intentionallywellpodcast@gmail.comHelp Abused and Homeless Animals In Need CUDDLY helps give animals a healthy life and a loving home. Help Vanessa's charity of choice above.Disclaimer: This post contains affiliate links. If you make a purchase, I may receive a commission at no extra cost to you.Support the showThis episode is for informational purposes only. Please consult a trusted health practitioner for individual concerns.
“Once you are aware of your top risks that you will likely face later on, it's amazing how your brain just starts to automatically think about, ‘Well that's interesting, I wonder if I could live that way.' Or ‘I wonder if I could pick up that exercise. I wonder if I could start walking a mile a day just to start getting in better shape. I wonder if I could change my diet instead of eating this cookie, I should maybe have this piece of fruit instead.' That's the way the mind works.” Ever asked yourself 'Who will take care of me as I age?' If so, this episode is for you. Our hosts Stephanie McCullough of Sofia Financial and Kevin Gaines of American Financial Management Group engage in a profound conversation with Carol Marak, an author, speaker, and mentor who has tackled this very question head-on. Her journey to a secure future will inspire you as she shares her path to financial stability, strategic relocation, and developing a comprehensive framework for successful solo aging. Our hosts along with Carol delve into the profound interconnectedness of retirement planning and life purpose, exploring how changes in one's living environment can dramatically influence health and fitness. Get ready to understand the challenges faced by individuals transitioning from significant careers and the role financial advisors play in helping navigate these waters. Stick around as they explore the significance of early planning for the future, taking into consideration factors such as family medical history, lifestyle choices, and overall life satisfaction. Carol emphasizes the importance of strong social connections and support base, regardless of whether you have kids or not. Tune in and get set to rethink solo aging through the lens of Carol Marak. Key Topics: The Pivotal Moment Carol Realized She Needed to Take Action (02:16) How Carol and Sisters Determined the Categories to Plan their Parents' Will (07:57) How Do You Know if You're Financially Stable? (15:27) How Do You Have Conversations with Clients about Finances? (19:41) Patient Advocates (25:52) Bringing Family History into the Picture (30:27) When to Start Thinking About Retirement (35:53) The Importance of Having a Support System (41:41) Planning is a Verb, Not a Noun (44:04) Resources: Carol Marak: Solo and Smart Aging Website Carol Marak on LinkedIn SOLO AND SMART: The Roadmap for a Supportive and Secure Future© (book) If you like what you've been hearing, we invite you to subscribe on your favorite platform and leave us a review. Tell us what you love about this episode! Or better yet, tell us what you want to hear more of in the future. stephanie@sofiafinancial.com You can find the transcript and more information about this episode at www.takebackretirement.com. Follow Stephanie on Twitter, Facebook, YouTube and LinkedIn. Follow Kevin on Twitter, Facebook, YouTube and LinkedIn.
On today's quirky show, I welcome Jen Palumbo, an epic human Energizer Bunny who takes a licking and keeps on ticking. Jen is a freelance writer, Forbes contributor, and women's health advocate, specifically for reproductive rights. In a spirited coincidence, it turns out we both went to the same college at the same time, were both Theater people, and have dozens of friends in common. We are ships in the night for sure. As fellow parents of IVF children, we bonded over the current state of the state. And as fellow Binghamton graduates, we bonded over Wegmans, being Theater nerds, and 1990s dorm life in the southern tier. Jen is a true Long Island: loud and proud. Let the hilarity, dark humor, and GenX Therapy begin. Enjoy the show.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.
Episode 33 -- Patient Perspectives: Smell & Taste, Genetic Diseases, Cancer, and Multiple MyelomaIn this episode of "The Patients Speak" podcast, host Mark Stinson engages in insightful interviews with four inspiring individuals who share their experiences as patients and advocates in different health conditions.· Katie Boateng, head of the Smell and Taste Association of North America, discussing the importance of understanding the impact of smell and taste conditions on patients' daily lives.· Seth Rotberg, an HD (Huntington's Disease) patient advocate, emphasizes the need for genetic counseling and collaboration between patients and clinicians in the treatment and research of genetic and rare diseases.· Howard Brown, a two-time cancer survivor and author, shares his journey of resilience and hope in his memoir "Shining Brightly." He highlights the importance of forming a collaborative team and maintaining optimism while dealing with cancer.· Yolanda Brunson Sarrabo, a multiple myeloma patient advocate, emphasizes the significance of patient empowerment and effective communication with healthcare providers. She encourages patients to ask questions, express emotions, and consider participating in clinical trials.Here are key quotes from each guest:1. Katie Boateng:"People want others to understand the enormous impact that smell and taste conditions have on their day-to-day lives. There seems to be a lack of empathy or understanding for how impactful these conditions can be."2. Seth Rotberg:"Genetic counseling is becoming more prevalent and important to know about the next steps. It's crucial to have the right resources and support when facing genetic and rare diseases."3. Howard Brown:"You gotta get up out of bed every day and push further and keep going. It's okay to sleep in bed one day; you gotta get back up the next day. Keep moving."4. Yolanda Brunson Sarrabo:"Everyone isn't a public speaker, but you can write down questions and use the nurses and healthcare team as resources. We need providers and researchers to find us, as there is a diverse range of patients with unique perspectives."Tune in to this enlightening episode as patients share their insights and advocate for better understanding and communication within the healthcare system.(c) 2023 BSB Media
What if I told you that there's a secret law out there that could eliminate your medical bills or, at the very least, reduce them if you're below a certain income level? And the income level is higher than you'd think-- way higher.Sounds too good to be true, right?Well, it's not. It's a real thing, and Dollar For is spreading awareness about this law so people can stop paying for medical bills that they don't have to pay.Dollar For is a non-profit organization dedicated to spreading the word about charity care. They help folks apply, either on their own or with assistance from their Patient Advocates... all for free. This week we sit down to discuss with Dollar For's founder, Jared Walker, and discuss the charity care program, how to find out if you qualify, and tips for dealing with an unexpected medical bill.See if you qualify: dollarfor.org/gethelpFollow on IG: https://www.instagram.com/dollarfor/Related Episodes:Quick Money Tip #20: Dealing with Unexpected Medical BillsMy Husband is Making me Pay for my "Luxury" EpiduralNegotiating a Medical Bill from $5k to $26?! & More Reddit Money StoriesClo Bare Blog: clobare.comFind me on social media at @clobaremoneycoachPlease rate and subscribe to support this channel!Free Money Guide: moneyrightguide.comFree Investing Class: lazyinvestingclass.comProduced by Elevate Media - Want to start your show? Reach out! This podcast is not intended as financial advice. Always do your own research and talk to your financial professional to discuss your situation. To read our full terms and conditions, head here:TERMS AND CONDITIONS
On this episode of TMU, we sit down with Ray Wezik, the Director of Policy and Advocacy for the American Urological Association (AUA), as we dive into the world of patient advocacy and lobbying. Ray shares his perspective as someone who works with over 75 patient advocacy organizations to leverage their voices and become better advocates together. We discuss the importance of collaboration between patient advocacy and medical professionals for effective efforts, and Ray shares insights on how networking events are bringing patients and urologists to state capitals to advocate for solutions and funding for research programs. Ray also shares valuable insights on working with regulatory agencies like CMS, and the value of determining CPT codes.
Navigating the healthcare system can be overwhelming and confusing, and making informed decisions can be a daunting task. Because of this, we have people like Aileen Gerhardt. Aileen is an independent, board-certified patient advocate who can help make sense of it all. In this episode, Aileen will explain how patient advocacy can help people make informed decisions, how it differs from geriatric care management, and how a patient advocate might assist a client who is preparing for an elective surgery. She will also discuss why it is important to create a “micro board of directors” for support and how to find a patient advocate. Additionally, she shares her experience in working with solo agents, offers advice for putting together a “Go Plan” for potential medical emergencies, and provides advice for finding a patient advocate (and why she suggests using the Patient Advocate Certification Board).What's Next?What are your views, comments or questions on patient advocates)? Share them with us at info@seniorityauthority.org! Stay ConnectedGet in touch with our host Cathleen Toomey on LinkedInYou can also find Seniority Authority on Facebook, on Instagram, or you can connect with us on our website!Subscribe to our show on Apple Podcasts, Spotify, or anywhere you get your podcasts.
Sylvia Reisman, Purity Patient Advocates (North Fulton Business Radio, Episode 596) Sylvia Reisman, Founder and Chief Patient Advocate at Purity Patient Advocates, joined John Ray on this episode of North Fulton Business Radio. She discussed her personal health journey which led to her passion for patient advocacy and starting her business, her business philosophy, complex […] The post Sylvia Reisman, Purity Patient Advocates appeared first on Business RadioX ®.
Hello friends and welcome back to our podcast, The Patients Speak, and happy New Year 2023. If you just started listening to our show over the first few episodes, you know we've heard many great stories and examples from leaders on how to listen better. Specifically, we've heard from patient advocates on the ways they promote the patient voice and how they share a commitment to helping us all elevate that voice to a whole new level.To start the new year, we wanted to share highlights of five patient advocacy guests to give you an idea of how they saw ways to accelerate the patient journey. We'll talk to Wendy Bjork, The Empress of MS. Michael Sapienza, the CEO of the Colorectal Cancer Alliance. Pam Cusick, Senior Vice President of Rare Patient Voice. Andrea Wilson Woods, founder and president of Blue Faery for Liver Cancer. Alicia Lawrence of NORD, the National Organization for Rare Diseases.We hope you enjoy this summary of interviews with patient advocates. Thanks to guests like these, we've enjoyed a solid start to our podcast. Already, we've had more than 5000 downloads and we've ranked in the top 0.5% of all podcasts. We've received over 700 five-star reviews on iTunes. Subscribe now, and if you'd like to leave us a comment or review or even a suggestion for a future guest, we'd certainly appreciate that.Thanks again to our sponsor, 83bar. If you'd like to know more about 83bar and the work they're doing in patient recruitment, patient education, and patient empowerment to create better patient outcomes, visit their website at 83bar.com.And certainly, come back again for our next episode. We'll continue our conversations with patient advocates like these, along with healthcare executives, clinical researchers, and medical providers -- all to give us insight into what we need to hear when the patients speak.
Today, I am chatting with Believe Big's Lead Patient Advocate, Patty Buddemeyer. Patty has been a part of the Believe Big family since the beginning and she has worked with hundreds of patients who reach out in search of information and answers along their cancer journeys.Join me as Patty and I cover a lot of territory for patients and caregivers, alike. We will talk about the importance of being your own "health ambassador" and why having a supportive oncologist is key to a cancer patient's care team. Patty will also share some sensible things loved ones can do to help and support a family member who is on a cancer journey.Connect with Patty at Believe Big:https://www.believebig.org/Suggested Resource Links:Believe Big: Questions To Ask Your OncologistBelieve Big: Frequently Asked Questions About MistletoeBelieve Big Podcast with Dr. Steven JohnsonBelieve Big Video Series: I Have Cancer, Now What?Hyperthermia Cancer Institute (California)
On today's quirky show, I welcome Jen Palumbo, an epic human Energizer Bunny who takes a licking and keeps on ticking. Jen is a freelance writer, Forbes contributor, and women's health advocate, specifically for reproductive rights. In a spirited coincidence, it turns out we both went to the same college at the same time, were both Theater people, and have dozens of friends in common. We are ships in the night for sure. As fellow parents of IVF children, we bonded over the current state of the state. And as fellow Binghamton graduates, we bonded over Wegmans, being Theater nerds, and 1990s dorm life in the southern tier. Jen is a true Long Island: loud and proud. Let the hilarity, dark humor, and GenX Therapy begin. Enjoy the show.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.
Patient Advocates do more than raise money—they are active participants in the drug development process. While the ALS Ice Bucket Challenge garnered global attention, lesser-known patient advocates also flex their expertise to drive new treatments and cures. In this episode, we talk with two moms, one who is a patient herself, about their work as partners in research and development, helping bring treatments for two rare diseases to the market. Susan Ruediger, Founder and Chief Mission Officer, CMT Research Foundation Nasha Fitter, CEO, FOXG1 Research Foundation
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