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Advocates in Action

The NPAF Podcast

A podcast amplifying the powerful stories of individuals and the collective needs of various communities across the country.

Have you ever felt intimidated, confused, or overwhelmed when trying to navigate the health care system? In those moments it can be hard to advocate for yourself and those you care about. Join our host Ashley D. Freeman as she speaks with patients, providers and caregivers who have found the strength to advocate for equitable access to affordable quality health care.

Advocates in Action is created by the National Patient Advocate Foundation, a non-profit with the objective of prioritizing the patient voice to achieve person-centered care. We are dedicated to amplifying the powerful stories of individuals and the collective needs of various communities across the country.

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The Host

Ashley Danyel Freeman

Manager, Stakeholder Outreach and Engagement
NPAF

Episode 1: Welcome to Advocates in Action by the National Patient Advocate Foundation

"We are walking softly and listening carefully to amplify the voices of those we work with. We don't want to tell their stories, we want them to tell their stories."

Gwen Darien

Executive Vice President, Patient Advocacy and Education
National Patient Advocate Foundation


Welcome to Advocates in Action, a podcast created by the National Patient Advocate Foundation. In our first season we explore rural health in the United States. We feature patients, advocates and providers who are developing innovative, effective approaches to improving health care in their communities.

On today’s episode we speak with Executive Vice President for Patient Advocacy and Engagement Gwen Darien. Listen as we introduce the mission of our organization, vision for this podcast and plans for our first season.

 

Episode 2: The 8-Hour Journey to Receive the Care She Deserves

"My doctor doesn't dismiss me based on my bloodwork… He is concerned about me holistically, not just what is in my chart."

Beth Madison

Professor of Biology
Union University

Beth Madison wasn’t surprised when she heard the diagnosis of rheumatoid arthritis. Her family had a strong history of this potentially crippling condition. She was, however, determined to carry on with her life and career as a science professor. She soon learned that her local doctors were unable to provide the advanced, aggressive treatment she needs, Instead of settling for those limited options, Beth used her skills to locate a practice able to give her the care she requires, and regularly makes the eight hour journey to Atlanta and back to her rural home in Jackson, Tennessee, Beth also sees her illness as an opportunity to dig deeper into herself and find her reserves of courage, hope and faith.

Do you need help with transportation to your doctor’s visit? Visit our National Financial Resource Directory

Beth volunteers for Global Healthy Living Foundation. Learn about their support program for patients.

Episode 3: The Domino Effect of One Person Making a Difference

"It takes just one person to make a difference in one life for that to be the domino effect."

Jessica Jones

Patient Advocate

"When you're in the middle of worrying about your health, the last thing you want to worry about is your finances."

Rebecca Barnes

Patient Advocate

Jessica Jones has faced a chronic illness most of her life, but that didn’t prepare her for her son’s rare heart disease. Becky Barnes lost her sister to lymphoma and has had more than her share of health problems. Both women have transformed their own experience into commitments to help others in their rural communities in Indiana and Kentucky. Jessica is working to address foot insecurity during the pandemic, while Rebecca helps people understand and access health care benefits. Both women speak powerfully to impact that one person can have in changing a community.

Would you like to become a NPAF advocate? Visit our Volunteer Opportunities

Episode 4: People Helping People in the Vulnerable Face of Mortality

"We don't take care of patients. We only take care of people and we do that remarkably enough with another bunch of people. We bring our skillset and personhood to understand what a person needs and wants."

Michael Fratkin

Founder, CEO and Physician
Resolution Care

Michael Fratkin’s commitment to palliative care began with an important lesson his grandfather taught him when he was a boy. Today, he heads Resolution Care, bringing end of life care to rural communities in Northern, California. Fratkin talks about his commitment to caring for “people not patients,” and the need for a holistic approach to providing the highest level of palliative care to seriously ill people and their families. He is also a leader in telehealth, which has proved to be a very effective tool for reaching his patients in widely separated communities.

Are you in a rural area and need help accessing care? Visit our National Financial Resource Directory

Learn more about Resolution Care and their innovative approach using telehealth.

Connect with Michael Fratkin on social media!

Twitter: @MichaelDFratkin
Facebook: Resolution Care
LinkedIn: Michael Fratkin

Episode 5: How Two Moms Became Greater Together

"That one family is going to get help and resources and it may not be everything they need but at least they were heard and someone understood what they were talking about."

Greta Goto

Special Projects Manager
Stone Soup Group

"If you work together, in collaboration it's better than working individually- we are stronger together."

Mary Middleton

Executive Director
Stone Soup Group

Finding appropriate treatment and support for a child with a rare disease is difficult in any circumstances, but it can be extremely challenging in rural Alaska. Specialists are few and far between and travel often involves hundreds of miles and long plane rides. Greta and Mary Middleton first crossed paths as they attempted to find good care for their children with special needs. They now work together to empower other families, locate and access good care and implement policies that address the complex problems they face.

The map above which truncates the Aleutian chain and islands shows an estimate of how large Alaska is to provide greater context about the barriers around traveling to receive care.  

Explore information about the Alaska Highway system. 

Learn more about Stone Soup Group and the ways they support families in Alaska. 

If you are located outside of Alaska and are looking for family to family support, please visit Family Voices and Parent Center Hub.

Episode 6: The Numbers Tell the Story

"Physicians need to think beyond the prescription, they need to think holistically about how what they are conveying to the patient is going to impact the rest of their life."

Kathleen Gallagher

Vice President Health Services Research
Patient Advocate Foundation


What does data collection and analysis tell us about the issues that people face when they face serious illnesses and try to access health care? Kate Gallagher works with the Patient Advocate Foundation to learn what issues patients face, how they deal with these, issues, what gaps exist in accessing equitable health care and what impact does financial toxicity have on people’s live. Kate and her colleagues provide the information critical to understanding both individual experience and bringing about important improvements to our health care system.

Are you in a rural area and need help accessing care? Visit our National Financial Resource Directory