Opinion: I’m a heart transplant recipient. I’m haunted by ‘ghost approval’ for medication I need to survive

OpinionFirst Opinion I’m a heart transplant recipient. I’m haunted by ‘ghost approval’ for medication I need to survive Just because an insurance company approves a medication doesn’t necessarily mean it’s accessible Manage alerts for this article Email this article Share this article By Payton HerresMay 19, 2026 Herres is a heart transplant recipient and patient advocate focused on improving access to lifesaving transplant medications. I’m a heart transplant recipient. The medications I take aren’t optional — they’re what keep my body from rejecting my heart. So when my transplant team prescribed everolimus (Zortress), it wasn’t a suggestion. It was a medical decision.Advertisement On paper, I have insurance coverage. In real life, I don’t have access. That’s the gap I’ve been living in — and it’s what I call “ghost approval.” “Ghost approval” is when something is technically approved or covered, but you still can’t get it. It looks fine on paper. It checks all the boxes. But when you try to fill the prescription, everything falls apart. There’s always a reason: It needs prior authorization. It has to go through a specialty pharmacy. It’s in a high-cost tier. Or the most common one I’ve run into — it’s not approved by the U.S. Food and Drug Administration for that exact use. That’s where things start to feel completely disconnected from reality. Advertisement Doctors don’t treat patients by following FDA labels word-for-word and stopping there. They use clinical experience, evolving research, and real-world outcomes to decide what’s best for the person in front of them. That includes everolimus, which is FDA-approved for liver and kidney transplants but is often used off-label in heart transplant care when physicians determine it is appropriate. It is not a fringe or last-resort option — it can help preserve kidney function and reduce the risk of cardiac allograft vasculopathy, a leading cause of late graft failure. My doctors didn’t choose it casually. They chose it for me. But insurance companies don’t seem to look at it that way. Instead, everything comes back to labeling — because heart transplant use is not included on the FDA-approved label, even when a transplant physician prescribes it as medically necessary. From the outside, this might sound like paperwork or red tape. Something frustrating, but manageable. It’s not. It meant my transplant team submitting multiple prior authorizations and completing peer-to-peer reviews — only for the medication to be denied. Even my transplant cardiologist was under significant stress trying to get it approved. My insurance broker also stepped in, contacting Anthem to check the status of the prior authorization and coordinating with Cleveland Clinic, but there was still no clear resolution. While that was happening, I was just days away from running out of my medication, with no clear way to refill it. I had sleepless nights worrying about missing doses, and there were moments I cried at work because I didn’t know what was going to happen. At one point, I turned to Facebook and publicly asked for help because I didn’t know where else to go. The post was shared more than 4,900 times. My donor’s mother even offered to pay for the medication herself, telling me that if something happened to me, it would feel like losing her son, Christian, all over again. After that public pressure, Anthem finally approved the medication — but the cost is still out of reach for me: about $500 for a 30-day supply or roughly $1,500 for 90 days. I make just over $35,000 a year working for a nonprofit.Advertisement Anthem has suggested mail order as a cheaper option, but that is not a safe or realistic solution for me. This is anti-rejection medication, and as a heart transplant recipient, I can’t risk delays, packages being delivered to the wrong address, stolen packages, or medication being damaged during delivery or by extreme temperatures. I’ve already had my medication delivered to the wrong location — including one that ended up at a Dollar Tree store instead of my family’s small business. That may be frustrating with an ordinary package, but with transplant medication, those kinds of mistakes can have serious consequences. Right now, I’m getting my medication through help from Claimable CEO Warris Bokhari and businessman/entrepreneur Mark Cuban, who have been helping me pay for it through Claimable’s Coverage Fund, and I get the medication through Mark Cuban Cost Plus Drug Company. I’m very grateful for their help, but it’s hard knowing that access to the medication keeping me alive depends on outside help instead of reliable insurance coverage. I’m not alone in this situation. Even with coupons or savings programs, access remained unreliable for many. These programs can change or disappear and often depend on pharmacy restrictions, making them an unstable substitute for consistent coverage. That’s the part people don’t see. They hear “covered” and assume that means handled. Safe. Taken care of. But coverage doesn’t mean much if a patient still can’t reliably obtain the medication they need. Because if a medication is prescribed, medically necessary, and used in real transplant care — but a patient still can’t realistically access it — then something in the system isn’t working. That’s why I started using the term “ghost approval.” Because that’s what it feels like — something that exists enough to be referenced, but not enough to actually rely on. If access only exists on paper, it’s not fully embodied access. Payton Herres is a heart transplant recipient and patient advocate focused on improving access to lifesaving transplant medications.Advertisement Letter to the editor Have an opinion on this essay? Submit a letter to the editor. advocacy, drug costs, health care costs, patients Submit a correction requestReprints Payton Herres Newsletter The smartest thinkers in life sciences on what's happening — and what's to come Recommended First Opinion May 19, 2026 Britain embraces a Massachusetts experiment on tobacco regulation — just as the state might roll it back First Opinion May 18, 2026 How to restore credibility to the CDC’s vaccine advisory committee Advertisement First Opinion May 18, 2026 ‘Patient autonomy’ has nothing to do with childhood vaccine policies First Opinion May 16, 2026 Marty Makary misunderstood something fundamental about the FDA First Opinion Podcast May 16, 2026 The cloudy truth about ‘blue zones’ Subscriber Picks