Patient Advocacy Voices

How do you drive awareness for a rare disease with a name that's difficult to even pronounce and a wide range of symptoms that mimic other conditions?In this episode, host Eric Racine and co-host Preeya George-Guiser sit down with Mary Jo Strobel, Executive Director of the American Partnership for Eosinophilic Disorders (APFED), about the organization's strategic approach to rare disease advocacy.Mary Jo shares how APFED blends creativity, strategy, and a patient-centered approach to raise awareness and improve lives for patients living with eosinophil-associated diseases. From creative targeted awareness campaigns to evidence-based initiatives, this conversation highlights how cross-sector collaboration can accelerate correct diagnosis and treatment and create lasting change in rare disease communities.

How will the shifting U.S. healthcare policy landscape impact patients? It's an important topic that many patient advocates are thinking about today.This month's special episode features a thought-provoking panel discussion recorded during the Sanofi Patient Advocacy Council meeting in Washington, D.C., where panelists dove into this topic. Adam Gluck, SVP and Head, U.S. and Specialty Care Corporate Affairs at Sanofi moderated the panel, which featured Randy Rutta, CEO of the National Health Council (NHC) and Matt Eyles, former President and CEO of America's Health Insurance Plans (AHIP).Tune in to hear the discussion, where the panelists shared insights around the biggest risks and opportunities for patient access and affordability in the current shifting policy landscape. They also emphasized the importance of collaboration between all stakeholders across the healthcare sector to drive truly meaningful changes for patients. 

Get ready for an inspiring conversation about the power of passion, purpose, and partnerships in evolving patient advocacy to meet the changing needs of a community! In this episode, Harold Wimmer, President and CEO of the American Lung Association, shares insights from his incredible 46-year journey with the organization. Harold reveals how the American Lung Association grew successful regional initiatives into powerful, national programs that deliver critical resources and support to lung patients across the country.  Join host Eric Racine and co-host Lisa Schmitt, US Public Affairs and Patient Advocacy Lead for Immunology at Sanofi, as they dive into the innovative programs that have defined the American Lung Association's success. Discover how the American Lung Association HelpLine, which began as a statewide service in Illinois 25 years ago, has become a lifeline for patients nationwide. Learn how the American Lung Association adapts to meet the evolving needs of its community through digital platforms, personalized support services, and bold advocacy for cleaner air.  Don't miss this episode packed with actionable lessons on driving scalable, long-term success in patient advocacy. Tune in to uncover Harold's blueprint for building meaningful partnerships and empowering patient communities like never before! 

Patient Advocacy Voices is dedicated to helping US advocacy groups strengthen capabilities in service to patients and their mission. Season 2 continues and will provide deeper insights and more pragmatic tips from patient advocacy leaders and visionaries. In this special episode to start the new season, host Eric Racine is joined by all his Sanofi co-hosts from Season 1 to recall the powerful stories and lessons learned from advocacy leader guests. Insights are recapped on vital topics such as ways to build trust and empower patients in local communities to act for better health, and how to collaborate on patient-centered policies. You'll hear how advocacy groups are generating evidence on patient value, bringing the lived experiences of patients into R&D, charting strategic paths to grow their organizations, and measuring and communicating outcomes. Adam Gluck, Sanofi's Senior Vice President of US and Global Specialty Care Corporate Affairs, joins to provide unique perspectives on the US health policy landscape and the critical role of patients' voices. It's a great way to learn about the many ways US patient advocacy organizations are making a difference for patients, science, and policy. After listening, you'll be ready for more incredible stories and inspiration from Patient Advocacy Voices in Season 2. 

With more than 100 years of experience, the National Health Council knows how to bring patient advocacy groups and other organizations together to advocate for patients' interests. How do they stay at the forefront of a patient-focused US healthcare system? They innovate and collaborate.   In this episode, Sanofi host Eric Racine and cohost, Demi Anastasiades, lead of US Public Affairs and Patient Advocacy for Immunology at Sanofi, are joined by Randy Rutta, CEO of the National Health Council. You'll hear about NHC Connect, a dynamic resource hub for the patient advocacy community to share insights and collaborate on patient focused policies, and how NHC develops a matrix of policy priorities on behalf of its nearly 200 members. NHC collaborates to drive equitable patient access, bring patients' perspectives into health technology assessments, and ensure artificial intelligence (AI) in healthcare is deployed responsibly and in the best interests of patients, among other priorities. Listen to learn from one of the best how to amplify the voice of patients to improve health policies and access to care. 

When it comes to meeting healthcare's biggest challenges, sometimes the best approach begins with curiosity. Dr. Jean Wright, MD, MPH, Chief Executive Officer of the Chronic Obstructive Pulmonary Disease (COPD) Foundation, has made an immense impact on the COPD community and knows firsthand how to bring new solutions that move the needle for poorly understood patient communities.  In this episode, Sanofi host Eric Racine is joined by Kate Tighe, Head of US Public Affairs and Patient Advocacy, Immunology at Sanofi, to discuss with Dr. Wright how shifting perspectives and sparking innovation can change outcomes for patients with historically overlooked conditions. Dr. Wright describes her straightforward yet creative approach to tackling seemingly inscrutable problems, how she handles the most difficult aspects of leadership, and why charting a path toward refreshing solutions can accelerate progress.

From leveraging existing resources to filling gaps with innovative tools, partnerships throughout the healthcare industry can help meet the needs of more patients and drive impact in an accelerated way. In this episode, Eric Racine is joined by Vicky DiBiaso, Global Head of Patient Informed Development and Health Value Translation at Sanofi, and Sara Loud from the Accelerated Cure Project, to discuss the transformative efforts of the Patient Advocacy Leaders in Drug Development Industry Network, also known as Paladin. Paladin is driving collaboration across biopharmaceutical companies and patient advocacy groups to help advance the development of life-saving treatments. They examine the challenges and opportunities in transforming healthcare innovation, with an emphasis on speed, inclusivity and collaboration.

David Panzirer, a trustee of the Helmsley Charitable Trust, discovered his calling when his daughter was diagnosed with type 1 diabetes (T1D). A businessperson at his core, David views healthcare grants as investments, and his team continuously develops a deep understanding of the ecosystem as a key success factor to maximize their impact. Learn from one of the most significant players in the field of venture philanthropy, his team's portfolio approach to healthcare investments, and their singular focus to improve people's lives living with disease. Sanofi host Eric Racine and co-host Andrew Vilcinskas – a T1D patient himself – discuss with David the intersection of advocacy, philanthropy and business. The Leona M. and Harry B. Helmsley Charitable Trust is a global philanthropy committed to helping people live better lives today and creating stronger, healthier futures for individuals and communities. They partner with people and organizations to invest in new ideas or research across six program areas. The Type 1 Diabetes (T1D) program is dedicated to helping the global T1D community live safer, better, and more fulfilling lives today while funding advancements in research and technology for a better tomorrow.

To help make an impact for patients, it's important to have a comprehensive understanding of how a disease impacts their day-to-day lives. Michael Osso, Chief Executive Officer of the Crohn's & Colitis Foundation knows this well. He and his team created a comprehensive research ecosystem that harnesses data– from reported anecdotes to clinical data, biosamples and more – to help researchers, patients, advocates and care teams get a holistic view of inflammatory bowel diseases (IBD) and drive advancements in the space. Sanofi host, Eric Racine and co-host Michael George discuss with him the importance of taking on such a large-scale project – one step at a time – and the dedication to building patient level data to inspire and accelerate research innovations for patients with IBD. 

Patient advocacy groups have become a powerful force engaging with clinical researchers. The National Bleeding Disorders Foundation (NBDF) has been one of the best at driving a research agenda that matters to patients, yet they still saw areas for improvement. Maria Santaella, Vice President of Research Strategy at NBDF, realized the importance of including patient voices at the very start of and throughout the research process. This is what it takes to ensure researchers understand the unmet needs and complications people live with every day. Learn how NBDF evolved from supporting researchers to ensuring that the lived experience of people affected by bleeding disorders is truly at the center of research. In this episode, Sanofi host Eric Racine and co-host Jane Smith discuss with Maria how to get to the next level of integrating patient voices and evidence into research. 

What does it take to grow a patient advocacy group from the ground up to become a driving force for patients in the US? Learn how Julie Block, President and CEO of the National Eczema Association (NEA), defined a bold long-term vision and learned to trust her team to stay true to the plan. Defining a five-year strategic blueprint, NEA took a broad view of stakeholders throughout the healthcare ecosystem, enabling them to set bold goals for what could be achieved through partnerships. Julie's personal growth as a leader blends humility with fearlessness. In this episode, Sanofi host Eric Racine and co-host Nick Taylor discuss with Julie the challenges, successes, and strategic planning that goes into successfully leading a patient advocacy group while keeping values at the forefront.

What does it take to improve access to specialty care for vulnerable and underserved populations? What if the starting point is a complete lack of specialty care services? When Kim Thiboldeaux, CEO of the Northeast Business Group on Health, was told there was no cancer or specialty care on Native American reservations, her first reaction was shock, then it quickly turned to advocacy and action. After years of hard work and perseverance, the first cancer center on native land was opened on the Navajo Nation, whose more than 40K members comprise the largest federally recognized tribe in the United States. Sanofi host Eric Racine and co-host Elizabeth Franklin discuss with Kim how she helped bring cancer care tailored to the needs of the Navajo Nation. It's an incredible story of listening, empathy, relentless dedication, and a promise kept.

Cancer can be an isolating condition, so Meredith Cowden has made it her mission to ensure other patients are not alone. Meredith, a cancer survivor living with chronic graft versus host disease (cGVHD), responded to adversity by forming the Meredith A. Cowden Foundation with her family to support and advocate for fellow transplant patients. The key to Meredith's success is her ability to advocate and form a successful alliance of advocacy groups that strengthens their ability to help and advocate for the cGVHD community. In this episode, Sanofi host Eric Racine and co-host Angie Bricco discuss with Meredith the keys to forming successful advocacy group alliances that encourage communication and collaboration to effectively help meet patient needs.

Impact is a word we often use in patient advocacy. We know it's important to the patients and communities being served, and that it also matters to the funders of advocacy programs. But how do you capture impact, when do you start, where does the information come from, and how should it be communicated? Sanofi host Eric Racine and co-host Elizabeth Franklin discuss this with our guest, Aicha Diallo, patient advocacy leader and senior director of programs at the Patient Empowerment Network (PEN), shares a methodology for capturing and communicating the impact of advocacy programs. Learn how PEN listens to the needs of their audience, involves patients and community partners in defining impact, and creates a process for ongoing data collection. Access to the right data enables clear communications with their important stakeholders. Aicha's impressive public health background and unique ability to keep a finger on the pulse of the communities she serves equips her with a wealth of knowledge that she shares in this episode.

Building trust and improving health in underserved communities can be a daunting challenge. Most would agree that “it takes a village” but how do you create that village, and who are the right partners? That's the problem faced by our guest, Dr. Laura Lee Hall, a patient advocacy leader, and President Emeritus of the National Minority Quality Forum (NMQF) Center for Sustainable Health Care Quality and Equity. Dr. Hall saw disparities in influenza immunization rates in communities of color and decided to do something about it. Learn how she connected clinical care providers in local healthcare systems with community organizations and national partners to improve outcomes and equitable care through the DRIVE initiative, Demonstrating Real Improvement in Value and Equity. Because of its success, the DRIVE program keeps expanding, and now extends to other health conditions and inequities. The results are impressive, and the insights have universal applicability for advocacy programs across therapeutic areas.