I am alive because of a heart transplant.

That heart belonged to a 24-year-old man named Christian Caruana. His mother, Mary Cutter, is now part of my life. She loves me, worries about me, and carries the unimaginable reality of losing her son while knowing his heart is still beating inside someone else. That “someone else” is me.

Because of that, taking my anti-rejection medication is not optional. It is survival.

For my entire transplant, I was stable on Everolimus, an anti-rejection medication prescribed as part of my care. I have had the same insurance company, Anthem Blue Cross Blue Shield, my entire life. Then suddenly, last year, they denied it.

Nothing about my transplant changed. Nothing about my need changed. The only thing that changed was the system around me.

My transplant team at the Cleveland Clinic did everything they were supposed to do. They submitted prior authorizations. They completed peer-to-peer reviews. They repeatedly advocated on my behalf. The denials kept coming. Over and over. As those denials dragged on, I got closer and closer to running out of my medication. I was days away.

That should never happen to a transplant patient.

The justification pointed to FDA labeling. Everolimus is not formally approved for heart transplant patients. But that had not changed. I had been stable on this medication for years under the guidance of my transplant team. My doctors made a clinical decision based on my case. The system overruled them.

Eventually, after public pressure and advocacy, Anthem approved the medication. But even then, access came with restrictions and barriers (high costs and requirements to use a specific mail-order pharmacy) that made it fragile and uncertain.

I filed complaints. I escalated the issue. The Ohio Department of Insurance reviewed my case. They sided with the insurance company, because the medication was approved.

That is the moment everything became clear. Approval did not mean access.

I call this ghost approval. Ghost approval is when a medication is officially approved, documented, or “covered,” but the patient still cannot reliably obtain it when it matters most. From the outside, everything looks resolved. From the inside, it is not.

Because transplant patients do not need theoretical access. We need real access: consistent, timely, and uninterrupted. Anti-rejection medication is not optional, and it is not interchangeable. It is ongoing, precise, and necessary to protect the organ keeping us alive. And yet, I was left counting down the days of the medication I had already depended on for years.

During that time, Mary, my donor’s mom, offered to pay for my medication herself. The woman who lost her son felt like she might have to step in financially to make sure I could keep his heart. That should never happen. A donor’s family should not have to carry that burden. Their gift is already immeasurable. The system should be protecting that gift, not putting it at risk.

People often suggest coupons or discount programs as a solution. But you cannot build survival on something temporary and unpredictable. And in my case, the problem wasn’t just cost. It was access.

What makes ghost approval so dangerous is that it allows every part of the system to claim success. The insurer points to approval. The regulator points to compliance. The process appears complete. But the patient is still left navigating delays, denials, and uncertainty. From the outside, it looks like bureaucracy. From the inside, it feels like your life is being negotiated.

We need to be more honest about what access actually means. A medication is not accessible simply because it is approved. It is accessible only if a patient can obtain it: reliably, consistently, and without interruption. Anything less is not access. It is an illusion.

I did everything I was supposed to do. My doctors did everything right. And still, I was days away from losing access to the medication keeping me alive. That is not a patient failure. That is a system failure.

Approval should not be the endpoint. Access should be.

Because for transplant patients, the difference is not abstract. It is life or death.

Payton Herres is a patient advocate.