I am a heart transplant recipient. I understand the responsibility that comes with the organ I was given. I take my medications exactly as prescribed. I go to my appointments. I monitor for anything that could signal a problem. I do everything I am supposed to do. And I still almost ran out of my transplant medication.

What I was not prepared for was having to fight to get the medication in the first place. When my transplant team prescribed everolimus, it was not a casual decision. It was based on my specific risks, my long-term care, and what they believed would best protect my health. From their perspective, the plan was clear. From mine, it was anything but.

The exhaustive battle for medication approval

There is a moment that kept repeating itself. After prior authorizations, appeals, and peer-to-peer reviews, I would think the issue had finally been resolved, only to be told it still was not approved. The process would start over again, adding delays to a medication I could not safely go without.

In my case, it meant repeated denials. Even after my transplant team submitted prior authorizations, appealed the decision, and completed peer-to-peer reviews, my insurance company, Anthem Blue Cross Blue Shield, continued to deny coverage.

Much of this came down to how the Food and Drug Administration (FDA) label was being applied. Even though my care was guided by transplant expertise and real-world use of the medication, the lack of a specific FDA indication for heart transplant became a barrier to access. And even when approval was eventually granted, access still did not follow. The medication was placed in a high-cost tier, and I was required to go through a mail-order system that added delays and uncertainty to a medication where delays can be dangerous. At one point, the situation became so uncertain that my donor’s mother offered to help pay for my medication herself, a moment that underscored just how far removed the system can be from the reality patients are living in.

The disconnect between clinical care and insurance systems

Because this is not a medication you can delay. It is not something you can come back to later. It is part of staying stable. It is part of protecting the heart I was given. But the system does not always reflect that urgency.

What makes it even more difficult is the disconnect between what my doctors know and what the system allows. My transplant team understands why I am on this medication. They have made that decision based on experience and evidence. But when it comes to actually accessing it, that context often gets lost. Instead, the process becomes about approvals, categories, and requirements that do not fully capture what transplant care looks like in practice.

As a patient, you end up in the middle of that. You are trying to follow medical advice while navigating a system that does not always align with it. You are making calls, waiting on responses, and trying to piece together what is happening, all while knowing that this is not something optional.

There is also a part of this that is not talked about enough: the mental weight. It is the uncertainty of not knowing if you will be able to get what you need. It is the repetition of explaining your situation to different people. It is the feeling that even when you are doing everything right, the outcome is not fully in your control.

Redefining medication access for transplant patients

From the clinical side, a medication is prescribed. From the patient side, that is where the process begins. And sometimes, it is the hardest part.

If there is one thing I wish more providers could see, it is that access is not just about whether something is technically covered. It is about whether a patient can realistically obtain it without barriers that delay or prevent care. Because when it comes to transplant, access is not a small detail. It is everything.

Payton Herres is a patient advocate.