National Patient Advocate Foundation

08/26/2026

Check out our latest resource on NPAF’s approach to regulatory advocacy, inspired by our webinar earlier this month led by Marian Grant

https://www.npaf.org/resources/grassroots-handout-regulatory-advocacy/

When Congress passes a law, federal agencies like the Centers for Medicare and Medicaid Services (CMS) write the detailed rules that turn that law into practice. This regulatory process directly determines how care is delivered, what patients pay out-of-pocket, and who is covered.

At NPAF, we practice continuous regulatory advocacy. We monitor rulemaking year-round, advocate for patient financial health so treatment does not come at the cost of everything else, and push for practical solutions like Needs Navigation in CMS models.

Want to go deeper into how regulations work and why public feedback matters? Watch our full webinar, The Hidden Half of Health Policy: Regulations and Why They Matter, on YouTube: https://youtu.be/I1OBzlJe200?si=PuOvWVEvN6e2NOLN

Patient stories are an important part of this process and inform our upcoming regulatory comment letters.

Consider sharing your stories with us here: https://bit.ly/4aZDCl1

Ever wonder who actually decides what Medicare and Medicaid cover? ...

08/19/2026

Today is Patient Advocacy Day!

At National Patient Advocate Foundation (NPAF), today is about celebrating the volunteers, patients, healthcare students, and family caregivers across generations who make up our grassroots network. The fight for equitable healthcare is intergenerational—from students stepping into the medical field to caregivers managing support for both aging parents and young adults.

Jen Barth, a steadfast NPAF volunteer from Oregon navigating care for multiple generations, shared why she speaks out:

"I advocate because, alongside tens of millions of Americans, I’m a member of the ever-growing "Sandwich Generation," as the daughter of a mother with progressive Multiple Sclerosis and the mother of twin daughters heading off to college this fall. Like so many families, we’ve faced rising insurance costs, coverage denials, provider access shortages, and ever-shifting benefits in recent years. I’m also deeply concerned about the broader impact that Medicaid changes and federal funding cuts will have on the care of millions of patients with serious and chronic conditions across the country. As we hear more and more examples of community members delaying care due to both financial hardship and the complex administrative hurdles required to access care in our current system, I’m proud to stand with the National Patient Advocate Foundation to champion a healthcare system that works for all of us."

That commitment is mirrored by college student and future healthcare leader Sumedha, a longtime NPAF volunteer and active member of our Volunteer Media Working Group:

"I’ve seen how financial and social challenges can affect someone’s health in very real ways. I advocate because I want to help make it easier for people to get the care they need."

Whether you are a student preparing to enter healthcare, a caregiver balancing family needs, or a patient navigating coverage hurdles, your perspective matters.

Every shared story becomes part of a comment letter, every comment letter becomes part of the public record, and every record has the power to shape healthcare regulations for generations to come.

Get involved and join NPAF’s grassroots volunteer network:
https://www.npaf.org/get-involved/
Share your story to strengthen our regulatory advocacy:
https://bit.ly/4aZDCl1

08/17/2026

On August 19, we are celebrating Patient Advocacy Day, and there is no better time to recognize the volunteers, patients, and caregivers who make up NPAF's grassroots network.

At the heart of NPAF's policy advocacy is one simple truth: real stories make our comments effective. When patients and caregivers share what it's actually like to navigate coverage gaps, cost barriers, or a system that was not built with them in mind, those stories transform our regulatory comments from statistics and arguments into something federal agencies cannot ignore. It's how we turn lived experience into the kind of evidence that shapes Medicaid and Medicare rules, and how we make healthcare work for all of us.

We are proud of this network because it is built on people willing to be honest about what they have lived through. Every shared story becomes part of a comment letter, every comment letter becomes part of the record, and every record has the power to shift how a regulation gets written or finalized.

Watch our video to see how your voice makes a difference:
https://youtu.be/I1OBzlJe200

Want to be part of it?

Joining NPAF's grassroots network means:

Sharing your story (written or video) to strengthen our regulatory comments: https://bit.ly/4aZDCl1

Connecting with a community of grassroots policy advocates working toward the same goal: https://www.npaf.org/get-involved/

In the lead-up to Patient Advocacy Day, we are celebrating everyone who has already shared their story and inviting anyone who has not yet to raise their voice.
Share your story: https://bit.ly/4aZDCl1

Follow NPAF for updates on how you can get involved.

Ever wonder who actually decides what Medicare and Medicaid cover? ...

08/12/2026

Ever wonder who actually decides what Medicare and Medicaid cover? It’s not just Congress.

Our recent webinar, “The Hidden Half of Health Policy: Regulations and Why They Matter,” breaks down the regulatory process that turns laws into real healthcare access, and why your voice matters in that process.

NPAF policy consultant Marian Grant explained that passing a bill is only the first step. Federal agencies like CMS then write the regulations that make laws real, and the public comment period is where everyday people can directly influence the outcome. As she put it, “You have a seat at the table… you can change healthcare.”

We also heard about NPAF’s work on Needs Navigation, a patient-reported quality measure now used across multiple areas of care, and the real-world impact of recent Medicaid work requirement changes.

Watch the full recording now on YouTube and follow NPAF so you’re the first to know about future sessions. https://youtu.be/I1OBzlJe200

“And so that’s where your stories really matter. We can quote statistics, we can quote evidence, we can make a persuasive argument, but your stories help us make that argument even more powerful.” – Marian Grant

Share your story securely here: https://national-patient-advocate-foundation.boast.io/form/share-your-story

Please share or tag someone who needs to see this. Real stories are our best shot at being heard.

08/10/2026

While we don’t really know what a "medically frail" exemption will look like in real life, It may impact someone like Teresa who is working three jobs to keep her son alive.

In her own words:
"I live in Florida with my 35-year-old son who has Oral Cancer... Social Security has denied him since his oral cancer is not 'life-ending.' That leaves me working 3 jobs to survive and struggling to pay for daily living expenses. I am already living the struggle that many Americans will now be facing with the changes to the Medicaid qualifications."

With Medicaid work requirements and strict new "medically frail" verification rules set to roll out nationwide by January 1, 2027, this crushing reality will become the norm for thousands of families. Bureaucratic lists and rigid medical codes will decide who gets care and who gets cut off.

National Patient Advocate Foundation (NPAF) is submitting an official comment letter to CMS to fight these rules, and we need real stories like this to show decision-makers the high stakes of their policies.

If this rule worries you, or if you are already living this struggle, please raise your voice with us.

To share your story securely (video or written) https://national-patient-advocate-foundation.boast.io/form/share-your-story

Please share or tag someone who needs to see this.
Real stories are our best shot at being heard.

08/06/2026

Thank you for joining us for this webinar about how regulations shape access, affordability, and the real care people can get.

Marian Grant reminded us, “You have a seat at the table… you can change healthcare.” That message stayed with us, and it captures why these conversations matter.

“[Regulatory advocacy]...that’s where your stories really matter. We can quote statistics, we can quote evidence, we can make a persuasive argument, but your stories help us make that argument even more powerful.”

Keep an eye out for the full, free webinar coming to YouTube next week, and be sure to follow so you’re the first to know.

To share your story securely, whether by video or in writing, use this link:

https://national-patient-advocate-foundation.boast.io/form/share-your-story
Please share or tag someone who needs to see this.

08/04/2026

What happens after healthcare legislation is passed?

Most people think passing a bill is the final step. In reality, it’s just the beginning.
Once a law is signed, federal agencies step in to write the regulations—the specific rules that decide how the law works in the real world. Regulations dictate who is covered, what comes out of pocket, and how easily you can access care.

This behind-the-scenes process is where health policy actually gets decided, and it’s where patient and caregiver voices can still shape the outcome.

Join NPAF policy leads Rebecca Kirch and Marian Grant to learn how rulemaking works and how your story can make healthcare better for everyone.

The Hidden Half of Health Policy: Regulations and Why They Matter
Date: Tuesday, August 4th
Time: 3:00 – 4:00 PM ET
Platform: Live via Zoom

👉 Register Here: https://act.npaf.org/a/hidden-half-health-policy-regulations-and-why-they-matter

07/30/2026

If a law is the foundation of healthcare, regulations are the actual blueprint. 🏗️
When Congress passes a bill, the story isn’t over. Federal agencies then write the regulations that decide what that law actually means in real life—who gets covered, what comes out of pocket, and how easily you can access care.

As NPAF’s policy consultant, Dr. Marian Grant explains, “this is where your story holds incredible power. Your lived experiences can directly shape these regulations, which changes policy, which ultimately makes healthcare better for all of us.”

Want to learn how to make your voice heard where decisions are actually made? Join us for our live 1-hour webinar!

To secure your spot today, register here: https://act.npaf.org/a/hidden-half-health-policy-regulations-and-why-they-matter

07/24/2026

One year ago, the passage of HR 1 put Medicaid coverage at risk. Historically, income determined eligibility. Now, work requirements mandate 80 hours of work per month.
While exemptions exist for individuals who are "medically frail"—including those living with cancer, serious mental illness, or complex disabilities—a new federal rule issued last month adds a dangerous layer of bureaucracy.

Under this new rule, having a diagnosis may no longer be enough. Enrollees may have to explicitly prove their condition prevents them from meeting the 80-hour work requirement, relying on rigid state medical codes.

If a patient's condition isn't on the list, or their medical records don't perfectly align, they risk losing their vital healthcare coverage while seriously ill. States must have these rules in place by January 1, 2027.

Follow us or sign-up for our newsletter to stay up to date. And please like and share this post so more people understand what’s happening with Medicaid.

07/21/2026

How will proposed Medicaid work requirements impact you, someone you love, or the patients and clients you serve? We want to hear from you.

Policy changes aren't just numbers on a page—they deeply affect real lives, care access, and financial health. As discussions around Medicaid work requirements continue, the National Patient Advocate Foundation (NPAF) is dedicated to ensuring that the voices of patients, families, and healthcare professionals are front and center.

Join us on July 22 for an open Office Hours. This is a dedicated forum to share what you are seeing, experiencing, or hearing on the ground. Whether you are navigating these changes yourself, caring for a loved one, or witnessing the impact on your clients, your story matters.
We are here to listen—and to lift these crucial perspectives to the places and decision-makers that matter most.

📅 When: Wednesday, July 22 | 4:00 PM – 5:00 PM ET
📍 Where: Virtual Open Forum
Whether you want to speak up or just listen in, your presence is valuable. Register below to join the conversation and help us ensure the reality of healthcare access is heard.

Register here: https://act.npaf.org/a/npaf-office-hours