Payton's New Heart

10/30/2026

This is pretty surreal. 🩷

American Healthcare Denied just released an entire podcast episode about “ghost approval” and shared my story.

One part that really stuck with me was hearing them say they had seen this happen to patients before, but didn’t know what to call it until they came across my story.

That’s why I started using the term “ghost approval” - because a medication can technically be approved or covered, but that doesn’t always mean a patient can actually access it.

They talked about my fight for Everolimus, my work bringing attention to ghost approvals, and how Warris Bokhari from Claimable and Mark Cuban stepped in to help me access my anti-rejection medication when insurance coverage still left it unaffordable.

It’s honestly crazy hearing something I started saying just to explain what was happening to me now being used to describe a much bigger problem patients face.

Thank you to Hannah and Bev at American Healthcare Denied for sharing my story and helping bring more attention to this issue. 🩷

🎧 Watch/listen here:

What happens when your insurance says your medication is covered, b...

10/11/2026

Some of the most powerful advocacy stories are born from the moments we never wanted to live through.

In my conversation with Payton Herres, she shared something that really stayed with me:

“Maybe I can use my story that came from something painful and terrifying and make it into something that can come out good and powerful.”

That is what advocacy can do. It can take fear, pain, uncertainty, and experiences that change us forever and turn them into a voice for change.

Payton didn’t choose the circumstances that gave her this story. But she chose what she would do with it.

And sometimes, our greatest strength comes from deciding that the hardest parts of our story will not be lived through for nothing.

Pain can become purpose. Fear can become courage. And a story can become a powerful force for change.

Listen to the full episode here: https://www.youtube.com/watch?v=ZlC4OeDzJO4&t=125s

10/05/2026

It was such a great day volunteering at the heart transplant picnic at Stricker’s Grove! 🩷

I loved having the opportunity to help out, spend time with the transplant community, and see so many familiar faces. It’s always special being surrounded by people who understand just how meaningful the gift of life truly is.

I’m grateful for organizations like Network for Hope and for everyone who helps bring transplant recipients, families, caregivers, and supporters together. It was so good to see everyone and enjoy such a beautiful day together! 💙💚

09/29/2026

Another story I wasn’t able to share here while Payton’s New Heart was unavailable was this feature from Moneywise about my fight to access Everolimus.

The article looks back at what happened when I learned my anti-rejection medication would no longer be covered the way it had been, the Facebook post I wrote when I was getting dangerously close to running out, and what happened after my story went viral.

Although my Everolimus was eventually considered covered again, it came with a dramatically higher cost — exactly the kind of situation that eventually led me to start talking about Ghost Approvals. A medication can technically be “approved” while still remaining financially or practically inaccessible to the patient who needs it.

The story also discusses how Mark Cuban, Mark Cuban Cost Plus Drug Company, Warris Bokhari and Claimable became involved and helped me obtain more affordable access to my medication.

I will always be incredibly grateful for the people who stepped in to help me. But I also keep coming back to the same question:

What happens to the patient whose story doesn’t go viral?

No transplant recipient — and no patient — should need media attention, thousands of shares, or influential people stepping in just to access a prescribed medication.

That is why I’m still fighting. 👻💗

📰 Moneywise published the full story on August 14. You can read it here:
https://moneywise.com/insurance/health/mark-cuban-heart-transplant-insurance-denial-medication

09/29/2026

Another article sharing my story 💗 This one goes pretty deep into my heart transplant, my fight to stay on Everolimus, the cost of my medication, Ghost Approvals 👻, and even Christian and his mom Mary.

It still amazes me how far this story has gone. I never expected any of this when I made that Facebook post because I was scared I was going to run out of medication.

Thank you States of Healthcare for taking the time to tell my story and bring more attention to what patients can go through just trying to access the medication they need.

Hopefully sharing my experience can help someone else going through the same thing. 💗

Read the full article below 👇

Discover Payton Herres' inspiring journey as a heart transplant recipient and her battle to ensure access to life-saving medication.

09/26/2026

Another piece I wasn’t able to share here while Payton’s New Heart was unavailable was an article written by Matthew Zachary about my Everolimus fight and the larger healthcare problem behind it.

The title says a lot:

“You Should Not Need To Know Mark Cuban To Get Unf**ked From American Healthcare.”

Matthew opens the piece by pointing out the contradiction at the center of my experience: medicine was able to successfully transplant a heart into me, yet years later I found myself fighting to reliably access the medication needed to help protect that heart.

I am incredibly grateful for the people who stepped in and helped me when I needed it, including Mark Cuban and others who amplified my situation.

But that has also reinforced something I believe very strongly:

Patients should not need connections, media attention, a viral post, or someone famous in their corner just to access prescribed, life-sustaining medication.

That is one of the reasons I continue talking about Ghost Approvals 👻 — because a medication being technically “approved” means very little if the patient still cannot realistically access it.

Thank you, Matthew, for using your platform and your voice to call attention to what happened to me and to the much larger problem it represents. 💗

If you missed the article, you can read it here: 👇

https://thematthewzachary.substack.com/p/you-should-not-need-to-know-mark

Healthcare access should not depend on who you know. 💗

There is something uniquely American about successfully transplanting a human heart and then screwing up access to the medication required to keep it beating.

09/24/2026

Another piece I wasn’t able to share here while Payton’s New Heart was unavailable was my second article published by KevinMD:

“Insurance denial after transplant: Approval isn’t access.”

This article gets to the heart of what eventually became my Ghost Approvals advocacy.

I wrote about how my Everolimus was eventually technically approved, but high costs and pharmacy restrictions still left access fragile and uncertain. I also shared what happened when the Ohio Department of Insurance reviewed my case: because the medication was considered “approved,” the situation did not qualify for the resolution I had been seeking.

That was when something became very clear to me:

Approval does not always mean access.

I started using the term “Ghost Approval” to describe situations where a medication is officially approved or covered on paper, but the patient still cannot reliably obtain it because of cost, pharmacy restrictions, delays, or other barriers.

For patients who depend on life-sustaining medications, theoretical access isn’t enough. We need access that is reliable, consistent, affordable, and uninterrupted.

This article was another opportunity for me to take what happened personally and turn it into a broader conversation about the way our healthcare system defines “access.”

I’m grateful to KevinMD for continuing to give me a platform to share the patient perspective and bring attention to this issue. 💗

If you missed the article, you can read it here: 👇

Insurance denial nearly cut off my anti-rejection medication after a heart transplant. See why approval is not access, and what ghost approval really hides.

09/22/2026

Another major development that happened while Payton’s New Heart was unavailable was having my story featured in MarketWatch.

The article, titled “‘I didn’t know what else to do’: Patients take their health-insurance battles to Facebook and LinkedIn,” looks at how patients are increasingly turning to social media when traditional insurance channels fail to get them the care or medications they need. My experience with Everolimus opens the story.

For me, social media was never about trying to become “viral.” I turned to it because I was scared, getting closer to running out of the anti-rejection medication that protects my transplanted heart, and I didn’t know what else to do.

What happened afterward showed me how powerful a patient’s voice can become when people are willing to listen, share, and help.

The article also discusses the role influential people such as Mark Cuban can sometimes play in amplifying patients’ insurance battles. In my own journey, Mark has helped bring greater attention to what I was experiencing.

What began as one frightened Facebook post has grown into a much larger effort to advocate for medication access, patient rights, and what I now call “Ghost Approvals” — when a medication may be approved on paper but still isn’t realistically accessible to the patient who needs it. 👻💗

I’m incredibly grateful to MarketWatch and healthcare reporter Jaimy Lee for taking the time to tell this story and bring attention to a problem that affects far more patients than just me.

If you missed the article, you can read it here: 👇

https://www.marketwatch.com/story/i-didnt-know-what-else-to-do-patients-take-their-health-insurance-battles-to-facebook-and-linkedin-500bda58

It still amazes me to think about how far this has come from that original Facebook post. And I still have more to catch everyone up on. 💗

Pushed to their limits, patients are turning to social media to plead for help getting their medical care covered.

09/19/2026

Another conversation I wasn’t able to share here while Payton’s New Heart was unavailable was my interview with Patient Voices in Pharmacy.

I joined patient advocate Loretta Boesing to talk about my heart transplant journey and the fight I’ve faced trying to access Everolimus.

We discussed the Anthem Blue Cross and Blue Shield denials and restrictions, the unaffordable costs I encountered, forced mail-order pharmacy requirements, and the broader problem I now call “Ghost Approvals” — when a medication is technically approved, but the patient still cannot realistically access it.

I also shared more about how Warris Bokhari, Claimable, and Mark Cuban stepped in to help when the system wasn’t working for me.

One of the biggest lessons this experience has taught me is simple:

Coverage is not access.

A medication can be listed as covered and still remain financially or logistically out of reach for the patient who depends on it.

I’m incredibly grateful to Loretta for giving me the opportunity to share my story and bring attention to the barriers patients face when trying to access prescribed medications. 💗

If you missed the conversation, you can watch it here: 👇

https://www.youtube.com/watch?v=ZlC4OeDzJO4

There is still much more to catch everyone up on, and I’m so glad to finally be able to share these pieces of the journey here again. 💗

What happens when a life-saving medication is approved… but still o...

09/17/2026

Another major development that happened while Payton’s New Heart was unavailable was seeing Ghost Approvals featured by Pharmacists United for Truth & Transparency (P.U.T.T.).

P.U.T.T. published an article titled:

“Ghost Approvals: The Insurance Practice That’s Putting Patients at Risk”

The article highlighted my experience trying to access Everolimus and helped introduce the broader concept of “Ghost Approvals” — situations where an insurance company technically approves a medication, but the patient still cannot realistically access it because of high costs, specialty pharmacy restrictions, delays, network requirements, or other barriers.

It also featured the patient survey I created to begin documenting how often this happens to other patients.

What began with my own experience has increasingly shown me that this issue is much bigger than one medication, one insurance company, or one transplant recipient.

An approval on paper does not always equal access in real life.

I’m incredibly grateful to P.U.T.T. for helping bring attention to this issue and for giving the Ghost Approvals concept a platform within the broader conversation about prescription drug access and transparency. 💗

If you missed the article when it was published, you can read it here: 👇

https://puttrx.medium.com/ghost-approvals-the-insurance-practice-thats-putting-patients-at-risk-73248326c3f5

And if you’ve ever had a medication technically “approved” but still couldn’t realistically access it because of cost, pharmacy restrictions, delays, or another barrier, you are exactly why I continue this advocacy. 👻💗

At 11 years old, Payton Herres received a heart transplant that saved her life. Now 26, she relies on a daily immunosuppressant, Everolimus…