Patient Advocacy Now

For nearly two decades, Deanna Steinley lived with unexplained symptoms that baffled doctors. An athletic child who grew weaker with physical therapy instead of stronger, she endured surgeries, frightening complications with anesthesia, changing life plans, and years of uncertainty before finally receiving a diagnosis of myasthenia gravis in 2017. In this conversation, Deanna shares the emotional reality of living with a rare neuromuscular disease, why early diagnosis matters, and how delayed answers affect every aspect of a person's life.

Beyond the medical journey, Deanna opens up about the often overlooked impact chronic illness has on relationships. She discusses losing friendships through isolation, learning new ways to communicate with her husband, navigating the anxiety of introducing herself in new communities, and why simply asking someone with a chronic illness to participate can be one of the greatest acts of inclusion. Her perspective reminds us that illness doesn't only affect the individual. It reshapes families, friendships, identity, and connection.

The conversation ultimately centers on resilience. Through her advocacy platform, Resilience Is Beautiful, Deanna explains why resilience is not about overcoming adversity once, but about continuing to move forward every single day, even when the challenges never completely disappear. Whether you're living with chronic illness, supporting someone who is, or simply facing difficult circumstances of your own, this episode offers hope, perspective, and a powerful reminder that our hardest days do not define us.

Resources: HospitalToHealth.com — Download Val's free Hospital Readiness Checklist and Medication Mastery Guide, and learn more about her book, From Hospital to Health.

Every family eventually finds itself navigating the healthcare system, but very few people are taught how to become effective advocates for themselves or someone they love. In this conversation, we explore Val's remarkable journey alongside her husband through ten years of heart failure, a heart transplant, and more than three decades of firsthand experience inside hospitals. Rather than approaching healthcare from a clinical perspective, she shares what she learned from waiting rooms, difficult conversations, medical mistakes, and the determination to ask better questions when everything felt uncertain.

We discuss the hidden gaps that exist within even the best healthcare systems and why patients, caregivers, and families often need to become active participants in their own care. Val explains how clear communication, courage, preparation, and attention to detail can dramatically improve outcomes, sharing powerful stories of advocating for her husband during critical moments when speaking up truly mattered. She also explains why she felt compelled to write her book as a practical roadmap for people who may never have access to a professional patient advocate.

Finally, we explore practical strategies anyone can begin using immediately, from organizing medications and preparing for hospital stays to reducing preventable medical errors. We also discuss an often-overlooked ingredient in healing: gratitude. Val explains why small acts of appreciation toward healthcare professionals can improve relationships, strengthen care, and create a better experience for everyone involved. Whether you're a patient, caregiver, advocate, or simply want to be prepared for the unexpected, this conversation offers practical wisdom that could make a meaningful difference when it matters most.

Step Into PA360°

Turn collaboration into referrals and practice growth

Patient Advocacy 360° is a professional community where advocates connect, collaborate, and grow their practices.

This brief video shows how PA360 helps advocates gain visibility, share expertise, and access new opportunities.

PA360° helps advocates:

Receive referrals through GNA’s Advocacy Support Center
Highlight expertise when complex cases arise
Collaborate with peers nationwide
Access professional resources and industry partners
Build stronger practices

PA360° also serves as the sourcing hub for GNA’s Advocacy Support Center, creating new opportunities for advocates to be discovered when families need professional support.

Already a GNA member? Access PA360° through your GNANOW member menu — no new password required. The platform feels familiar but is built exclusively for the profession — no distractions, just peers and opportunity.

Step into PA360° today and start collaborating with advocates nationwide.

In this heartfelt episode, we welcome back pediatric advocate Rebeka Acosta, BCPA, for a deeply personal and inspiring conversation. Rebeka shares the emotional decision to step back from her advocacy practice to focus on her son’s health, while reflecting on the tremendous progress made for pediatric healthcare in Nevada. From her early work helping families navigate fragmented systems to the upcoming launch of the state’s first freestanding children’s hospital, she discusses the power of persistence, collaboration, and community voice in driving meaningful change.

Rebeka also opens up about how advocates can build strong relationships with community organizations, turning shared goals into lasting partnerships that improve care for children and families. She explains the value of showing up in person, building trust, and creating connections that outlast any one practice or individual. Through her work with organizations like Gigi’s Playhouse, she has helped transform how local centers empower parents, volunteers, and staff to better support families with complex medical needs.

As the conversation turns to mentorship and the future of the field, Rebeka reflects on what new advocates need most: emotional resilience, community, and a clear understanding of their unique value. She shares candid lessons from her own journey and a vision for a more unified advocacy movement, one where independent advocates, healthcare providers, and community leaders work together to create a system that truly serves children and families.

Rachel J Nash traces her journey from rehabilitation counseling roles inside large systems (state vocational services, VA, Medicaid social work) to launching a private advocacy practice anchored in ethics, transparency, and patient empowerment. She explains why board certification matters to her—adherence to a code of ethics, continuing education, and clear boundaries such as not serving as a client’s POA—and how her work today focuses on adults, especially veterans and civilians with complex, long-ignored issues. Rachel demystifies VA basics like what a 10% service-connected disability rating enables, why continuity of care and accurate documentation strengthen claims, and how presumptive exposures (e.g., Agent Orange, burn pits) can link later conditions to service. She dives into mental health advocacy, candidly noting her own bipolar diagnosis and using it to frame a practical “cake” model where medication and therapy are only two ingredients alongside sleep, movement, relationships, purpose, and faith. She calls the mental health system the hardest to navigate due to stigma, overmedication, rushed visits, poor follow-through, and scarce beds or step-down programs; her counter is meticulous preparation, written timelines, and modeling collaborative, respectful communication in the exam room. Boots on the ground in the Carolinas, Rachel attends appointments, coordinates across providers and insurers, and insists on clients having “skin in the game” as true partners. Her one big system wish: more doctors with time and latitude to practice real medicine.

Resources Mentioned:
[email protected]
704-254-1407
https://www.va.gov
https://www.pacboard.org

In this episode, we sit down with author and advocate Cynthia Overton to discuss her new book, The Clear Cane Chronicles, which explores what person-centered care really looks like in practice. Cynthia explains the evolution of models of care from traditional to patient-centered to person-centered and how the last one looks beyond the medical condition to the whole individual, considering lifestyle, relationships, and beliefs. She shares her personal journey of surviving spinal cord surgery in her twenties and how her recovery shaped her passion for improving healthcare systems to be more compassionate, collaborative, and responsive.

Cynthia opens up about the critical role her family played in her healing process and the challenges she faced navigating the insurance system when coverage for her life-saving surgery was initially denied. Drawing on established frameworks such as the Picker Principles and the National Advisory Board’s six principles, she outlines how providers and patients can work together to achieve better outcomes. She also shares how modern healthcare organizations, such as One Medical, exemplify person-centered care through accessibility, convenience, and genuine collaboration between doctors and patients.

Listeners will learn how Cynthia’s experiences and research have informed her call for systemic change, empowering patients to take an active role in their own care while urging providers and payers to adopt practices rooted in empathy, dignity, and partnership. Her book, The Clear Cane Chronicles, is available on Amazon, and Cynthia will soon share excerpts and practical insights for patients on her website and Instagram.

In this episode, we speak with Dana Jarvis from MiracleFlights.org, a nonprofit that has provided more than 165,000 free flights over the past 40 years to help children access specialized medical care not available near home. Serving all 50 states, Miracle Flights covers commercial airfare for pediatric patients aged 17 and under who must travel for treatment of rare, chronic, or complex medical conditions. Dana explains that once a child flies with Miracle Flights even once before turning 18, they become eligible for continued support as adults for future medical needs, ensuring long-term access to care.

Dana highlights how Miracle Flights assists families facing conditions that often require multiple follow-up visits, such as organ transplants, neuroblastoma, or club foot. She describes partnerships with top hospitals like the University of Nebraska Medical Center, Children’s Hospital of Wisconsin, and the Paley Foundation in Boca Raton. The organization focuses on removing logistical and financial barriers so parents can choose the best possible specialists for their children.

The discussion also explores how Miracle Flights has modernized and simplified the application process. By visiting miracleflights.org and clicking “Request a Flight,” applicants can complete nine brief pre-screening questions in just a few minutes to determine preliminary eligibility. The process is intentionally transparent and compassionate, minimizing paperwork and providing fast clarity to families under stress. For more details, applicants can consult the checklist and FAQ sections on the website.

Advocates and healthcare professionals can reach out directly to Dana Jarvis at [email protected] to schedule informational presentations or learn how to help clients apply. Whether supporting a transplant follow-up or a specialized procedure, Miracle Flights aims to make sure no child is denied critical care simply because of distance.

Healthcare advocate Joyce Griggs shares her journey from navigating her partner’s dangerous post-surgery crisis to founding United States of Healthcare, a platform empowering patients to become their own advocates. Drawing on 20 years in healthcare communications, Joyce opens up about the assumptions that nearly caused tragedy, and why self-advocacy is as essential a life skill as financial literacy. She explains how preparation, asking the right questions, and challenging assumptions can change outcomes—sometimes even save lives.

In this conversation, Joyce highlights practical tools from her course Healthcare Powered by You, including how to prepare for doctor visits, document family health histories, build care teams, and navigate financial and insurance barriers. She also shares her innovative integration of AI into advocacy education, helping patients cut through information overload and feel confident in high-pressure medical situations.

Listeners will walk away with actionable strategies to advocate for themselves or loved ones, and a fresh perspective on why self-advocacy isn’t optional—it’s survival.

Resources Mentioned:

https://www.unitedstatesofhealthcare.com
Doctor’s Visit Checklist: checklist.unitedstatesofhealthcare.com
Healthcare Powered by You (course on self-advocacy skills)
AI in patient advocacy: foundational prompt for asking healthcare questions
South by Southwest (SXSW) Health & Tech corridor

Key Topics Covered:

Why self-advocacy is the “first aid” of healthcare literacy
The gap between knowing the system and surviving it
Common assumptions patients make that can be dangerous
How to prepare for rushed doctor’s visits (before, during, and after)
Essential questions to ask providers about treatment options and medications
The role of AI in making healthcare information accessible
What patients misunderstand about insurance, coverage, and rationing

In this episode, Dr. Nicole Rochester shares her remarkable journey from practicing pediatric medicine to becoming a nationally recognized health advocate. Sparked by her experiences caring for her late father, Dr. Rochester realized how vital her medical knowledge and connections were in navigating a broken healthcare system. That realization inspired her to create Your GPS Doc in 2017, where she helps families and patients understand their diagnoses, bridge communication gaps, and make empowered decisions about care.

Over time, her work expanded beyond one-on-one advocacy to training other physicians to do the same. Through her program Navigating Health Advocacy Ready Set Launch, she has guided dozens of physicians in transforming their careers, building advocacy businesses, and addressing mindset barriers that hold them back. She emphasizes that while medical knowledge is critical, learning how to market, price, and build sustainable practices is just as important for long term success.

Dr. Rochester also speaks nationally on critical issues like empathy in healthcare, medical gaslighting, and systemic racism. Her TEDx talk introduced the concept of the “90 second encounter,” showing how small shifts in patient connection can transform trust and outcomes. She continues to advocate for structural accountability in healthcare while helping patients and doctors alike cut through barriers. To learn more about her advocacy work, coaching, and speaking engagements, visit: http://yourgpsdoc.com

In this episode, we sit down with Dr. Sherika Newman, a hospice and palliative medicine physician and founder of Doctor in the Family. Dr. Newman shares how her journey in patient care led her to launch a patient advocacy service and later expand into weight management. She explains why obesity is now understood as a chronic brain-based disease, the groundbreaking role of GLP-1 medications, and the concept of “food noise” that many patients struggle with. Dr. Newman also discusses her philosophy of blending lifestyle changes with medicine in what she calls the Life Med Journey. The conversation highlights compassion, patient-centered care, and the importance of self-advocacy in today’s healthcare landscape.

Resources Mentioned:
Phone: 404-900-8654
Website: http://www.mydif.com