We are thrilled to introduce two of the voices leading our discussion at the June 10th Policy Consortium. Our speakers bring a powerful blend of professional expertise and lived experience to the table:
Speaker Profile: Becky Barnes
In addition to serving as a longtime NPAF grassroots advocate, Becky is a Kentucky Certified Community Health Worker, rural patient advocate, and PhD student in Social Work at the University of Kentucky. As the Founder and Executive Director of the Patient Voices Matter Foundation, she brings over 15 years of patient advocacy experience dedicated to reducing healthcare disparities and improving healthcare access across Eastern Kentucky and Central Appalachia. Becky has also participated in activities with the Patient Centered Outcomes Research Institute and National Organization of Rare Diseases to elevate patient voices in healthcare research, policy and systems navigation.
Hear her story 🔗 https://act.npaf.org/a/npaf-june-policy-consortium
National Patient Advocate Foundation
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The healthcare system should work for all of us. Let's change it together. NPAF translates the experience of patients nationally into policy recommendations.
The National Patient Advocate Foundation (NPAF) Foundation is a non-profit organization providing the patient’s voice in improving access to high-quality, patient-centered healthcare through non-partisan legislative and regulatory reform. These patients have been helped by our companion organization, Patient Advocate Foundation (PAF), which provides, at no cost, direct, sustained professional case
25/05/2026
What exactly is a Community Health Worker (CHW), and why are they vital to the future of health care?
CHWs are frontline public health professionals who have a deep understanding of the communities they serve. They serve as a critical link between clinical settings and social services. By focusing on the social and economic factors that influence wellness, they ensure that a patient’s "prescribed" care plan is actually an "achievable" one.
At our upcoming Policy Consortium, we’ll explore how CHWs work alongside Needs Navigators to identify and mitigate the financial barriers that often go unaddressed in traditional doctor visits.
Join the conversation on June 10th. 🔗 https://act.npaf.org/a/npaf-june-policy-consortium
Financial hardship is a health issue — and for millions of patients and families, it's the barrier standing between them and the care they need.
Registration is now live for the next NPAF Policy Consortium!
This Policy Consortium will continue the conversation we started in March, focused on the shifting policy landscape and its impact on financial health.
In this June convening, we’ll bring in the perspectives of community health workers and needs navigators — who already treat financial health as a vital sign — and highlight what the broader healthcare system can learn from them.
Join this discussion to hear lived experience insights and research findings grounded in the voices of the people most affected by the gap between medical care and financial reality.
📅 Date: June 10, 2026
⏱️ Time: 4:00 PM ET
🔗 https://www.npaf.org/events/june-2026-policy-consortium/
As we observe Mental Health Awareness Month this May, it is crucial to recognize that the burden of healthcare costs is a weight on the mind. When families are forced to choose between a life-saving prescription and basic necessities like groceries or rent, the healthcare system is failing its core mission.
This impossible choice creates a psychological toll that manifests in ways that actively sabotage medical outcomes:
Skipping Care: This isn't just about missing one pill; it’s the dangerous cycle of rationing doses or canceling follow-up appointments to save money. This creates a constant state of anxiety and "medical guilt" that erodes mental well-being.
The Stress Paradox: The body cannot heal effectively under the weight of chronic debt. Worrying about bills triggers physiological responses—such as elevated cortisol levels—that can worsen underlying conditions and lead to burnout or depression.
Preventable Setbacks: Financial hardship often leads to a "snowball effect." A minor health issue becomes a crisis simply because the initial intervention was out of reach, leading to a sense of hopelessness that makes it even harder to manage one's health.
Needs Navigation can ease these complex cost concerts, learn more about it here:
https://www.npaf.org/resources/needs-navigation-issue-brief-2/
Have you or a loved one experienced stress due to the costs of care? Let us know in the comments.
🌟 Volunteer Spotlight: Celebrating National Volunteer Month!
This National Volunteer Month, we’re celebrating the heartbeat of NPAF: our incredible volunteers. Today, we’re shining the spotlight on Emma Romano, our lead fact-checker for the Volunteer Media Working Group!
In a world where healthcare information can be overwhelming, Emma is our frontline defender of accuracy. Her work ensures that the resources we share are reliable, evidence-informed, and truly helpful to patients and caregivers.
Why Emma Volunteers:
The Power of Truth: Emma knows that getting the facts right is essential to helping patients navigate their care journeys with confidence.
Empowering Decisions: She is driven by the belief that every patient and caregiver deserves access to clear, educational materials to make informed decisions about their health and well-being.
Advocacy in Action: Emma turns her passion for accuracy into a vital service, ensuring our community has the tools they need to manage the far-reaching and complex costs of care.
We are so grateful for Emma’s sharp eye, dedication, and heart for our mission. Thank you, Emma, for all you do to support our community!
Join us in the comments to give Emma a huge thank you for her hard work this National Volunteer Month! 👇
27/04/2026
As we wrap up National Volunteer Week, we at the National Patient Advocate Foundation (NPAF) are pausing to honor the heart and soul of our mission: Our Volunteers. Advocacy is more than just a series of policy goals; it is a movement fueled by the courage of individuals who turn their personal hurdles into a collective force for change. From navigating the far-reaching and complex costs of care to championing Needs Navigation as a structural solution, our volunteers are the bridge between lived experience and evidence-informed policy.
At NPAF, our community is built on three core pillars that guide everything we do:
Authenticity: We believe in showing up as our full selves. Our advocacy is rooted in the real, unvarnished stories of patients and caregivers.
Connection: We break down the isolation of the healthcare journey by building a supportive community where every voice is heard and valued.
Action: We don't just talk about the problems—we drive measurable change through legislative advocacy, national campaigns, and grassroots organizing.
Your Voice is the Catalyst for Change
The healthcare system can often feel overwhelming, but you don't have to navigate it—or try to fix it—alone. We are looking for passionate individuals to join our nationwide network of advocates. Whether you are a patient, a family caregiver, or a healthcare professional, your perspective is the key to creating a more equitable, affordable, and person-centered system.
Why Volunteer with NPAF?
Amplify Your Impact: Translate your personal journey into advocacy that influences national health policy.
Find Your Community: Join working groups dedicated to media, policy, and outreach alongside peers who truly "get it."
Lead the Way: Gain the tools and training to become a leader in the patient advocacy movement.
Ready to take action?
This National Volunteer Week, turn your passion into purpose. No matter how much time you have to give, there is a place for your voice here.
👉 Become an NPAF Volunteer Today: https://linktr.ee/NPAF
This National Volunteer Week, we’re going behind the scenes with Mariam, a powerhouse member of our Volunteer Media Working Group!
Mariam doesn’t just advocate; she creates. From filming engaging videos to brainstorming fresh content ideas for NPAF’s social platforms, she uses her unique talents to make the complex world of healthcare advocacy accessible and relatable for everyone.
How did she get started? It all began with one simple, courageous step: sharing her story. Volunteers like Mariam are the lifeblood of NPAF. They turn personal experiences into powerful tools for change, ensuring that the "far-reaching and complex costs of care" aren't just statistics, but stories that demand action.
Ready to join the movement? There are so many ways to lend your voice:
New here? Start by sharing your story. Your lived experience is the foundation of our advocacy.
Already a volunteer? We want to hear from you! Drop a comment below or use the link in our bio to tell us: "Why do you volunteer with NPAF?"
Let’s keep building a healthcare system that works for all of us.
👉 Find both links in our bio: linktr.ee/NPAF
Volunteer Spotlight: Celebrating Jen Barth 🌟
This National Volunteer Week, we are shining a bright light on Jen Barth, a dedicated NPAF volunteer from Portland, Oregon, who has been an integral part of our community since early 2024.
Jen wears many hats—advocate, volunteer leader, and member of the "Sandwich Generation." Since 2011, she has been an informal caregiver for her mother, who lives with progressive Multiple Sclerosis (MS). Through her powerful storytelling and blog contributions, Jen has pulled back the curtain on the "hidden" realities of caregiving, offering both vulnerability and practical wisdom to our network.
Read Jen’s Full Journey:
https://www.npaf.org/blogs/when-family-caregiving-hits-the-road-what-im-learning-along-the-way/
https://www.npaf.org/blogs/checking-in-with-ourselves-and-each-other/
20/04/2026
At NPAF, we don’t just have "volunteers, we have a powerhouse community of advocates, storytellers, and change-makers. From the West Coast to the East Coast, you are the heart, soul, and literal voice of everything we do.
Whether you’re leading a working group, crafting content, or speaking with lawmakers, you are turning the far-reaching and complex costs of care into a conversation that cannot be ignored. To each and every one of you: THANK YOU. You make this movement move!
Let’s kick things off with a little inspiration! 🌟
We want to hear from YOU. In the comments or via our link in bio, tell us: Why do you volunteer with NPAF? Is it to champion Needs Navigation? To make sure other families don't have to navigate the system alone? Or to turn your lived experience into evidence-informed policy? Whatever your "why" is, we want to celebrate it!
👉 Share your story or join the movement here: linktr.ee/NPAF
NPAF Official: Instagram, Facebook | Linktree National Patient Advocate Foundation
We Want to Hear From You!
As we gear up for National Volunteer Week (starts April 19!), we want to spotlight the incredible people and partners in our grassroots network who make our mission possible. We are gathering comments, quotes and even fun quips from you, our grassroots volunteers. Tell us what motivates you in your advocacy with NPAF so we can celebrate the impact of your participation in the vital work we do together.
Take action using this link: https://national-patient-advocate-foundation.boast.io/form/why-volunteer
17/04/2026
When the System Functions as Designed, Why Do Patients Still Feel Alone?
In a powerful new reflection, Melanie Marien discusses the transition from clinician to caregiver. Despite 20 years of clinical experience, Melanie discovered that even "insider" knowledge cannot shield a family from the far-reaching and complex costs of care.
Modern healthcare excels at specialization, but as Melanie notes, "Specialization distributes responsibility. It does not integrate it." The labor of holding those fragments together often falls on families, becoming an invisible "caregiver tax" of phone calls, portals, and medical lists rewritten at kitchen tables.
Why this matters for the future of care:
Navigation is Safety Work: Coordination should not be "ambient work" left to grieving families—it must be a resourced clinical deliverable.
The Inequity of Advocacy: Outcomes should reflect disease biology, not a caregiver’s personal capacity to fight the system.
Redefining Quality: We must move beyond metrics like readmission rates to measure what truly matters: the reduction of friction during a family's most vulnerable moments.
Melanie’s journey is a call to recognize that "tenderness is labor" and that true health equity requires an infrastructure designed to support the whole person—not just the diagnosis.
🔗 Read the full post here: https://linktr.ee/NPAF