Advertise on podcast: Patient Advocacy Voices

Transplantation can save lives. So why do patients who could benefit still face so many barriers to receiving one? The science and clinical capabilities of transplantation have advanced dramatically, yet the patient journey remains extraordinarily complex. From understanding transplant options and getting referred to the right center to navigating insurance, organ availability, policy changes, and a complicated healthcare system, patients can encounter friction at nearly every step. Underlying many of these challenges is something even more fundamental: trust. In this episode, host Eric Racine, PharmD, and co-host Kemi Osundina-Mkhize, PharmD, of Sanofi are joined by Henry Randall, MD, President of the American Society of Transplant Surgeons (ASTS). Together, they explore where patients are getting stuck in the transplant system and how clinicians, professional societies, patient advocates, policymakers, and other stakeholders can work together to improve access, build trust, and improve the patient experience. Dr. Randall shares how ASTS works to elevate patients' voices, advance transplant access, strengthen health literacy, address misinformation, and prepare for policy changes and emerging technologies that could shape the future of transplantation. In this episode, you'll learn about: Ways that patient advocacy and stakeholder collaboration can improve access and help patients navigate a changing transplant systemHow evidence-based communication, health literacy, and trusted messengers can build trustWhy listening to patients is only the first step toward meaningful changeWhy patient advocates need a seat at the table as AI and other technologies transform transplantationA leadership lesson for advocacy professionals: listen across disciplines and bring diverse perspectives togetherThis conversation is a reminder that scientific innovation alone does not guarantee patient access. Progress also depends on reducing system friction, earning trust, listening to patients, and turning their experiences into meaningful action.

What can decades of successful vaccine advocacy teach every patient organization?   Effective advocacy goes beyond raising awareness. It builds trust, removes barriers, collaborates with many partners, and empowers patients to make informed decisions.  In this episode, host Eric Racine and co-host Courtney Fahey of Sanofi are joined by Amy Pisani, CEO of Vaccinate Your Family. Drawing from more than 30 years of leadership in vaccine advocacy, Amy shares lessons on how to combine scientific evidence with personal stories, work with trusted messengers, equip community partners with practical resources, and continually adapt as the information and public health landscapes change. In this episode, you'll learn about: What it takes for advocacy to go beyond awareness to remove barriers and improve patient access to care and prevention How to build trust through credible messengers, respectful communication, and collaborationEffective ways to combine personal stories and science to educate and inspire actionHow coalition building and strategic partnerships can strengthen advocacy efforts and impactPractical communication approaches, including the CASE method, to address concerns, build confidence, and support informed decisionsHow strong leaders evolve their organizations, adapt to changing needs and environments, and remain grounded in their mission over timeThis episode distills the foundations of effective advocacy into practical lessons every advocacy leader can put into action: building trust, mobilizing partners, removing barriers, advancing health policy, and improving health of the people you serve.

Who gets to define value in healthcare? Although policymakers, payers, and healthcare professionals all play a role, patient advocacy leaders know that value must also be defined by the experiences of patients and the clinicians who care for them. In this episode of Patient Advocacy Voices, we explore how advocacy organizations can help ensure healthcare policies are shaped by the people most affected, and why proactively engaging patients is essential to protecting access to care. Host Eric Racine is joined by co-host Kate Tighe for a conversation with Derek Flowers, Executive Director of the Value of Care Coalition. Together, they discuss how the Coalition brings together patients, providers, caregivers, and advocacy organizations to advance a more patient-centered approach to healthcare value and access. Derek shares how the Coalition combines education, data, and state-level advocacy to help policymakers better understand the real-world impact of healthcare policies, while equipping advocacy organizations with the resources and opportunities to amplify patient and provider voices throughout the policymaking process. In this episode, you'll learn about: Why patient perspectives are essential to defining healthcare value How advocacy organizations can proactively impact healthcare policy before decisions create unintended access barriersWays that coalitions can amplify patient, caregiver, and provider voices, and support advocacy organizations via education, research, and policy expertiseWhy is it increasingly important for patient advocates to engage in state-level healthcare policiesHow combining data, lived experience, and stakeholder engagement can help advance policies that improve patient outcomesLeadership lessons on collaboration, flexibility, and coalition-building that advocacy organizations can apply in any disease areaIt is critical that advocacy leaders across all therapeutic areas have a seat at the table to help define healthcare value and improve access for patients. This episode offers practical insights to build partnerships, strengthen patient engagement, and ensure healthcare policies reflect what matters most to patients.

Patient advocacy leaders work every day to make sure patient voices do more than get heard. They want those voices to shape decisions, improve care, guide research, and advance policies that affect patients’ lives. In this episode of Patient Advocacy Voices, we hear from an organization doing exactly that.  Host Eric Racine is joined by co-host Melissa Dupont, Global Public Affairs Lead, Neurology at Sanofi, for a conversation with Lisa Butler, President and CEO of the GBS-CIDP Foundation. Through patient listening, global expert collaboration, data generation, and advocacy, the GBS-CIDP Foundation is helping ensure that patient perspectives inform standards of care, research priorities, regulatory conversations, and the everyday support for people living with Guillain-Barré Syndrome (GBS), Chronic Inflammatory Demyelinating Polyneuropathy (CIDP), and Multifocal Motor Neuropathy (MMN).  Lisa shares how her family's experience with GBS inspired a lifelong commitment to advocacy and explains how the Foundation is helping transform rare disease care by bringing patients into conversations from the very beginning. The discussion highlights how the Foundation combines peer connections, global medical expertise, data, advocacy, and research to support patients, establish common clinical language, partner with regulators, strengthen education, and advance research grounded in what matters most to patients. In this episode, you'll hear about: How patient input can shape research, clinical terminology, care standards, and regulatory conversationsWays to use registries, symptom tracking, and community engagement to identify unmet needs and guide research prioritiesWhy patient-to-patient connection remains essential, even as digital tools and data become more importantHow partnerships with healthcare providers, industry, and regulators can accelerate innovationWhy hope must be grounded in listening and paired with action to build a better future for patients as science and care continue to evolveThis episode offers a practical look at what it really means to embed patient advocacy across the full lifecycle of care and innovation. For advocacy leaders in any disease community, the conversation provides a powerful example of how patient experience can be turned into evidence, action, and lasting impact.

What does it take to make sure innovation, policy, and public health actually work for older adults? Too often, patients and caregivers face a hard path from diagnosis to treatment, shaped by Medicare complexity, out-of-pocket costs, communication gaps, and administrative barriers that get in the way of care. In this episode of Patient Advocacy Voices, host Eric Racine is joined by co-host Katie Oppenheim, Head of US Government Relations at Sanofi, for a conversation with Sue Peschin, President and CEO of the Alliance for Aging Research. Together, they discuss how aging research, Medicare policy, vaccine education, and patient advocacy come together to shape access and outcomes for older adults. Sue shares how the Alliance for Aging Research is working to change the narrative on healthy aging, advance evidence-based policy, and help patients better navigate the system. Drawing both on her leadership experience and her personal perspective as a caregiver, she offers practical insight into the barriers older adults face and what it takes to reduce them. In this episode, you’ll hear about: How Medicare benefit design, affordability, and utilization management can affect real patient accessWhy aging research matters for chronic disease, infectious disease, and healthier lives as people ageHow advocacy organizations help translate complex policy changes into useful guidance for patients and familiesWhy vaccine education and trusted communication still matter, especially for older adultsWhat mission-driven leadership looks like during times of policy and public health changeThis episode offers practical lessons for advocacy leaders, policymakers, and anyone working to make the healthcare system easier to navigate for older adults and caregivers.

When someone is diagnosed with cancer, the expectation is that care begins quickly and smoothly. In reality, many patients and caregivers find themselves navigating a complicated system, juggling access barriers, approvals, and logistics before treatment even begins. In this episode of Patient Advocacy Voices, host Eric Racine is joined by Meagan O’Neill, Executive Director of the Association of Cancer Care Centers (ACCC), alongside co-host Rachel Solomon of Sanofi. Together, they explore how cancer care is shaped not just by scientific advances, but by the systems, operations, and local realities that determine whether patients can access timely, effective care. Drawing on her background in oncology consulting and her personal experience as a caregiver for her mother, Meagan shares why so many of the biggest challenges in cancer care are structural rather than scientific. The conversation dives into the crucial role of community oncology, the operational gaps that delay access to care, and how ACCC is working to bridge the gaps between innovation and practical, everyday solutions for both providers and patients. With most cancer care delivered in community settings, advocacy leaders will learn about ACCC’s “how to” approach that helps close the gap between breakthrough science and real patient access. In this episode, you’ll gain insights on: Why access to care is often determined by where a patient livesNon-clinical barriers to patient outcomes, including fragmented systems, administrative burden, and workforce shortagesThe critical role community care settings play in delivering the majority of care in the U.S.How collaboration across clinical centers, care teams, and advocacy organizations can reduce friction for patients and providers alikeHow data and patient stories together can drive more effective advocacy and system changeThis episode is a timely reminder that improving patient care requires more than medical innovation alone. It takes practical solutions, stronger collaboration, and systems designed to help patients move through care with fewer delays and less burden. It also reveals how patient advocacy organizations can play a critical role in making this happen.

A highly respected patient advocacy organization with a trusted identity and decades of impact made a bold decision to change – the reasons behind this decision matter for every organization.  For many advocacy leaders, brand identity is deeply tied to trust and recognition. But as science evolves and patients’ needs become more complex, organizations must ask themselves: are we reaching all the patients we’re meant to serve? In this episode of Patient Advocacy Voices, host Eric Racine is joined by Anders Kolb, President and CEO of Blood Cancer United, alongside returning co-host Elizabeth Franklin of Sanofi. Together, they explore one of the most difficult and necessary decisions an organization can make: transforming an already strong identity to better serve patients.  What may look like a simple rebrand is, in reality, a story of leadership, courage, and a deep commitment to patients. Dr. Kolb shares both his professional journey as a pediatric oncologist and his personal connection to blood cancer. He reveals how data, listening, and lived experience uncovered a critical gap: too many patients did not see themselves reflected or served by the organization. This resulted in a strategic change from the Leukemia & Lymphoma Society to Blood Cancer United, a name and movement designed to be more inclusive, more representative, and expand access and support for everyone affected by blood cancer. In this episode, you’ll gain insights on: How to recognize when your organization’s mission has outgrown its brandHow to make a bold, forward-looking decision by reading the right signalsWhy inclusive language helps more patients feel seen, supported, and connectedHow to tie culture, strategy, and success metrics around real patient impact Ways to lead a large-scale organizational change This episode reveals how proactive leadership decisions can transform an organization to expand its impact, remove barriers, and ultimately connect more patients to the support they need when it matters most.

How can patient advocacy leaders ensure that artificial intelligence truly serves the people it is meant to help? As AI rapidly reshapes the healthcare system, patient advocates have both an opportunity and responsibility to influence how these technologies are designed, governed, and implemented to transform patient health. In this episode of Patient Advocacy Voices, host Eric Racine welcomes back Randy Rutta, President and CEO of the National Health Council (NHC), alongside Fabrice Bocquillon, Global Head of Digital Patient Experience at Sanofi, for a timely conversation on AI, innovation, and patient-centered leadership. Together, they explore how AI is being applied across healthcare, from accelerating drug discovery to improving disease diagnosis and enhancing how patients navigate care and access support. They discuss what it will take to ensure patients are not just beneficiaries of AI innovation but also active partners in shaping it. In this episode, you’ll gain insights on: Why patient groups must actively shape the future of AI in healthcareWays that AI can help reduce friction across the patient journeyWhat “responsible AI” means including fairness, transparency and accountabilityHow patient advocates can collaborate with tech innovators, policymakers, and other health system players to ensure AI is patient-informed from design to deploymentHow NHC’s Patient Experience + Innovation Center (PXI) is creating new pathways for patient groups and technology innovators to work togetherThis is a pivotal leadership moment for the patient advocacy community. This episode is a call for advocacy leaders to engage, ask critical questions, and help set the standards that ensure AI truly benefits patients while remaining ethical, transparent, and grounded in lived experiences.

How do we rebuild trust in vaccines when fear and misinformation stand in the way, especially for autistic individuals and their families? In this episode of Patient Advocacy Voices, host Eric Racine is joined by co-host Heather Entenmann, U.S. Public Health Engagement Lead at Sanofi, for a thoughtful conversation on vaccine confidence, trust, and inclusion. Together, they welcome two leading voices in public health and advocacy: Danielle Hall, former Vaccine Education Lead at the Autism Society of America, and Dr. Kelly Moore, President and CEO of Immunize.org. Drawing on lived experience, decades of public health leadership, and frontline advocacy work, the conversation explores why the long-debunked myth linking vaccines and autism continues to persist, and why rebuilding trust requires more than facts alone. The discussion highlights how healthcare experiences, sensory needs, anxiety, and empathy all play critical roles in shaping vaccine decisions, and what advocacy leaders and providers can do differently to better support autistic individuals and their families. In this episode, you’ll gain insights on: Why misinformation about vaccines and autism endures, and how to address it with empathy, not judgmentHow healthcare experiences and sensory needs influence vaccine confidence in the autism communityPractical ways providers and vaccination sites can reduce anxiety and create more inclusive, respectful experiences for immunizations in any disease areaHow advocacy organizations, healthcare professionals, and trusted messengers can counter misinformation by leading with empathy and authenticityThis conversation is a powerful reminder that rebuilding trust in public health starts with listening, understanding lived experiences, and meeting people where they are, because confidence is built not just through evidence, but also through empathy.

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 it take to move from patient-centric talk to patient-driven action? In this episode, we go inside Sanofi’s Patient Community Promise, a commitment to truly integrate patients throughout every part of its global organization.  Host Eric Racine is joined by Sanofi co-hosts from around the world: Kersten Sharrock, Amy Akers-Teets, Catherine Coulouvrat, and Nick Taylor. They share how the Patient Community Promise was co-created with more than 80 patient advocacy leaders, how Sanofi is both measuring and publicly reporting the ways this promise is reshaping its culture, decision-making, and actions for patients. They are also joined by special guest Michael Osso, President & CEO of the Crohn’s & Colitis Foundation, who returns to the podcast to provide an external perspective on what true patient partnership looks like, and why it’s urgently needed as the healthcare landscape evolves. You’ll hear examples of integrating patients throughout every stage of the scientific innovation lifecycle, from R&D to patient access to people-centered healthcare systems. Across the conversation, the group reflects on the cultural transformation required to meaningfully share the table with patients, the power of real-world data, and how patient-informed insights can accelerate medical innovation for all patient communities.  This episode is packed with insights on how to: Co-create commitments with patient leaders that are actionable and transparentIntegrate patient engagement throughout your organization to drive ideas and decisions Accelerate patient-driven innovation through real-world data, lived experience, and continuous listeningStrengthen partnerships with patient leaders and organizations to close gaps in research, access, and careSimplify processes and make partnerships easier and more impactfulSustain culture change by aligning behaviors, metrics, and accountability to what matters to patientsThis episode offers a rare, behind-the-scenes look at how bold commitments become lived behaviors, and why partnering differently with patients is essential for the future of healthcare.

How does an advocacy organization with a historic legacy transform and lead on the most pressing issues facing its constituents today?  Host Eric Racine and co-host Robin Johnson sit down with Cindy Rahman, President & CEO, and Erin Jones, Senior Director Legislative & Strategic Counsel, at March of Dimes. From its historic role in eradicating polio to its modern fight for the health of all moms and babies, March of Dimes evolves by mobilizing data, storytelling, and collaboration to drive meaningful change in maternal and infant care. In this episode you’ll gain insights on how to: Stay mission-driven in a rapidly changing environment by empowering your teams to engage in the community and share ideas Activate and sustain a nationwide network of advocates and volunteers whose voice and efforts make a differenceDeploy partnerships and hyper-local collaborations to build trust and address healthcare gaps Leverage data and patient storytelling for effective advocacy and policy changeTune in to hear how March of Dimes turned its deep-rooted history into forward-looking advocacy and solutions, and learn about capabilities to help your organization make an impact in this dynamic healthcare environment.

When patients are living with a misunderstood condition, and healthcare providers may not always have the answers, advocacy organizations have the power to step in and help close the gaps. In this episode, host Eric Racine and co-host Elizabeth Franklin sit down with Caroline Kruse, President & CEO of the Platelet Disorder Support Association (PDSA), whose personal experience with ITP, a rare autoimmune disease, profoundly shapes how she leads. From helping patients and clinicians recognize ITP sooner, to connecting patients, engaging in R&D, and advocating for patient-focused policies, PDSA is powered by a team of people with lived experience.   In this episode you’ll hear insights on how to:  Amplify disease awareness through storytelling and creative outreach Overcome the challenge of educating healthcare providers about a misjudged diseaseBuild connections that transform patient isolation into patient empowermentContribute to the leading edge of innovation by generating patient data and bringing patients’ perspectives directly to the scientific communityWhether you work in a rare disease area or any underserved patient community, this conversation offers fresh ideas and practical approaches for expanding your organization’s reach and impact.

Successful patient advocacy groups often start with a simple but powerful question: What do our patients need that no one else is delivering? The CHES Foundation took this approach head on, turning gaps in care, education, and belonging into innovative, measurable programs for the rare bleeding disorders community. In this episode, host Eric Racine and co-host Jane Smith sit down with Janet Brewer, Co-Founder & Executive Director of the CHES Foundation, to explore how CHES builds solutions that address true unmet needs of patients and caregivers. Janet shares how her personal journey shaped an approach to meet people where they are, listen deeply, and create programs they’ll never forget. From launching a unique camp for inhibitor patients and families, to making learning fun through disco bingo trivia at conferences, CHES reimagines how advocacy organizations can educate and empower communities. In this episode you’ll find practical insights on how to:  Listen to what patients and families really need and turn it into creative, data-driven programs Design experiential education that is memorable and measurableDeliver impact for populations that lack solutions – learning from CHES solutions for children with inhibiters, women and girls with bleeding disorders, and people with ultra rare bleeding disordersContinually improve by acting on program data and community feedback This episode is a powerful look at what happens when education and support is designed not just for patients but with them, offering relevant takeaways for leaders working in any therapeutic area.

In this episode of Patient Advocacy Voices, host Eric Racine and co-host Marco DeThomasis, People Business Partner, Specialty Care at Sanofi, sit down with Schroeder Stribling, President & CEO of Mental Health America (MHA). Together, they explore how data, early intervention, and workplace culture can help address America’s growing mental health crisis. From national trends to practical tools, this conversation blends strategy with humanity – offering advocacy and business leaders insights they can apply to help improve mental health in their organizations and communities. Listeners will gain valuable insights on: The importance of screening and tools used by MHA for early identification of mental health concernsWays to reduce stigma and create a culture that promotes trust, authenticity, and wellbeingWhat employees expect and how it leads to a safer and more productive workplaceExamples of how leaders can role model mental wellnessThis episode is a must-listen for anyone ready to rethink ways to advance mental health and wellbeing, whether you're leading an organization, managing a team, serving a community, or advocating for better health policies.  Content Warning: This episode includes discussions of sensitive mental health topics. Listener discretion is advised.