Patient Advocacy Voices

Hosted by Sanofi US Patient Advocacy

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Latest episode

Nov 2026

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About the show

Patient advocacy is a critical area in healthcare that is transforming the lives of patients across the country by helping them overcome barriers to access and care. Join Sanofi US Head of Public Affairs and Patient Advocacy, Eric Racine, and his co-hosts to meet some of the unsung heroes leading patient advocacy organizations. In each episode, we will discuss the challenges each group has faced and share actionable insights to address gaps and help make the U.S. healthcare system work better for patients. Whether you're a seasoned advocate or new to the field, we hope this podcast will open your mind to new ideas and inspire action. Subscribe now and become part of a community dedicated to making a difference for patients. This podcast is provided as a resource only and does not constitute an endorsement by Sanofi of any particular organization or its programming. Additional resources on this topic may be available and should be investigated.

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33 recent

November 3, 2026Episode 1036 min

When Science Isn’t Enough: Breaking Barriers to Care in Rare Disease

What happens when scientific progress outpaces patients’ real-world experiences? For people living with rare diseases, scientific innovation alone doesn't guarantee access to care. The journey from diagnosis to treatment can be filled with obstacles, and patient advocacy organizations play a critical role in closing these gaps. In this episode, host Eric Racine and co-host Allie Boutin of Sanofi have an insightful conversation with Aviva Rosenberg, CEO and Co-Founder of the Gaucher Community Alliance. They explore what patient advocates can do to address barriers to diagnosis, treatment access, and care. As someone living with Gaucher disease, the mother of a son with the same condition, and a healthcare attorney, Aviva brings a unique perspective on the challenges patients face and how advocacy can help overcome them. Drawing on her nearly 20-year journey to diagnosis and her leadership in the rare disease community, Aviva shares how she turns lived experience into actions for newborn screening advocacy, policy change, patient education, and community building, and why patient voices must be included early in healthcare innovation to develop solutions that address their real needs. In this episode, you'll learn: What advocacy organizations can do to help patients and families navigate a complex healthcare system to access the treatments and care they need How policy advocacy can address systemic barriers, from newborn screening and insurance restrictions to treatment affordability and access to home infusions Ways to empower patients and families through education, peer connections, and grassroots advocacy that strengthens communities How patient advocacy organizations can partner with researchers and industry to shape innovation priorities and help accelerate development of treatments that matter most to patients This episode offers actionable insights for patient advocates and healthcare professionals looking to close the divide between scientific progress and a better patient experience. It's a powerful reminder that scientific breakthroughs only fulfill their promise when patients can benefit from them, and that strong advocacy can help bridge the gap between innovation and access.

September 30, 2026Episode 939 min

Where Patients Get Stuck: Reducing Friction and Building Trust in Transplantation

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 system How evidence-based communication, health literacy, and trusted messengers can build trust Why listening to patients is only the first step toward meaningful change Why patient advocates need a seat at the table as AI and other technologies transform transplantation A leadership lesson for advocacy professionals: listen across disciplines and bring diverse perspectives together This 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.

August 31, 2026Episode 849 min

Going Beyond Awareness to Build Trust and Inspire action: Leadership Lessons from 30 Years of Effective Vaccine Advocacy

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 collaboration Effective ways to combine personal stories and science to educate and inspire action How coalition building and strategic partnerships can strengthen advocacy efforts and impact Practical communication approaches, including the CASE method, to address concerns, build confidence, and support informed decisions How strong leaders evolve their organizations, adapt to changing needs and environments, and remain grounded in their mission over time This 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.

August 5, 2026Episode 742 min

From Patient Experience to Policy Action: Bringing Patient and Provider Voices Into the Decisions That Shape Healthcare

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 barriers Ways that coalitions can amplify patient, caregiver, and provider voices, and support advocacy organizations via education, research, and policy expertise Why is it increasingly important for patient advocates to engage in state-level healthcare policies How combining data, lived experience, and stakeholder engagement can help advance policies that improve patient outcomes Leadership lessons on collaboration, flexibility, and coalition-building that advocacy organizations can apply in any disease area It 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.

July 2, 2026Episode 637 min

Leading Change in Rare Disease: What We Can Learn from the GBS-CIDP Foundation

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 conversations Ways to use registries, symptom tracking, and community engagement to identify unmet needs and guide research priorities Why patient-to-patient connection remains essential, even as digital tools and data become more important How partnerships with healthcare providers, industry, and regulators can accelerate innovation Why hope must be grounded in listening and paired with action to build a better future for patients as science and care continue to evolve This 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.

May 28, 2026Episode 539 min

Inside the Alliance for Aging Research: Closing the Gap Between Innovation and Patient Access

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 access Why aging research matters for chronic disease, infectious disease, and healthier lives as people age How advocacy organizations help translate complex policy changes into useful guidance for patients and families Why vaccine education and trusted communication still matter, especially for older adults What mission-driven leadership looks like during times of policy and public health change This episode offers practical lessons for advocacy leaders, policymakers, and anyone working to make the healthcare system easier to navigate for older adults and caregivers.

April 29, 2026Episode 437 min

The “Last Mile” in Cancer Care: What It Takes to Turn Innovation Into Access

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 lives Non-clinical barriers to patient outcomes, including fragmented systems, administrative burden, and workforce shortages The 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 alike How data and patient stories together can drive more effective advocacy and system change This 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.

March 31, 2026Episode 331 min

Reading the Signals: How One Successful Organization Knew It Was Time to Change

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 brand How to make a bold, forward-looking decision by reading the right signals Why inclusive language helps more patients feel seen, supported, and connected How 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.

February 26, 2026Episode 246 min

Shaping the Future of AI: A Leadership Moment for Patient Advocacy

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 healthcare Ways that AI can help reduce friction across the patient journey What “responsible AI” means including fairness, transparency and accountability How patient advocates can collaborate with tech innovators, policymakers, and other health system players to ensure AI is patient-informed from design to deployment How NHC’s Patient Experience + Innovation Center (PXI) is creating new pathways for patient groups and technology innovators to work together This 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.

January 22, 2026Episode 139 min

Rebuilding Trust: What the Autism Community Teaches Us About Vaccine Confidence

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 judgment How healthcare experiences and sensory needs influence vaccine confidence in the autism community Practical ways providers and vaccination sites can reduce anxiety and create more inclusive, respectful experiences for immunizations in any disease area How advocacy organizations, healthcare professionals, and trusted messengers can counter misinformation by leading with empathy and authenticity This 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.