PUTT Blog | ICYMI - Ghost Approvals: The Insurance Practice That's Putting Patients at Risk
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At 11 years old, Payton Herres received a heart transplant that saved her life. Now 26, she relies on a daily immunosuppressant, Everolimus (Zortress), to prevent her body from rejecting that transplanted heart. Her physicians consider the medication medically necessary, and her insurance company has technically approved coverage for it.
So why has accessing that medication become a nightmare?
When "Approved" Doesn't Mean "Accessible"
Payton's experience is what she and other patient advocates call a "ghost approval." A ghost approval occurs when a prescription clears the prior authorization process on paper but still encounters specialty pharmacy restrictions, PBM routing requirements, soaring out-of-pocket costs, and administrative barriers that make it functionally inaccessible without outside help.
For Payton, that help has come from Mark Cuban, Warris Bokhari (CEO of Claimable), the Helping Hearts Foundation, and others who stepped in when the system failed her. Even Mary Cutter, the mother of Payton's heart donor, Christian Caruana, offered to help pay for the medication needed to protect her son's gift. Payton is deeply grateful for that support, but remains clear-eyed about the larger issue.
"I should not need outside donors, charitable assistance, or emergency help to access a transplant medication my physicians consider medically necessary."
Her out-of-pocket costs have continued to rise with each refill. A 30-day supply of the medication typically costs pharmacies around $100. Yet under her insurance plan, Payton has been quoted approximately $500 for a 30-day supply and as much as $5,000 for a 90-day supply through a preferred retail pharmacy. While her insurer's designated mail-order pharmacy may offer lower costs, the medication remains expensive and still presents significant financial challenges.
For Payton, however, relying on mail-order carries additional risks. As a heart transplant recipient, she depends on uninterrupted access to her anti-rejection medication. In the past, she has experienced delayed shipments, damaged packages, and prescriptions delivered to the wrong address. Mail-order medications may also be left outside in extreme heat or cold, and packages can be stolen after delivery. Even a brief disruption in access to a medically necessary transplant medication can have serious consequences, making reliable and timely access an essential part of her care.
Payton argues that patients should not be forced to choose between affordability, safety, and dependable access to a medication their physicians consider medically necessary. Yet that is precisely the dilemma many patients face: pay dramatically higher prices at a local pharmacy or accept the risks and limitations of a mail-order system for medications they depend on to stay alive.
Fighting for Answers
Payton did not simply accept the situation. She filed complaints and sought assistance from multiple agencies and organizations in an effort to find a solution. She contacted the Ohio Department of Insurance, only to be told that because her employer-sponsored health plan is governed by ERIS; it falls under federal jurisdiction rather than state regulatory oversight. She reached out to elected officials, patient advocates, and healthcare stakeholders while continuing to work with her transplant team at Cleveland Clinic.
Despite months of outreach, appeals, and advocacy, meaningful solutions remained elusive. At nearly every turn, Payton encountered expressions of concern and sympathy, but little practical relief from the obstacles preventing affordable and reliable access to a medication her transplant team has considered medically necessary for more than a decade.
So Payton decided to become her own advocate—and then some.
This Isn't Just One Patient's Story
Payton suspected that her experience was not unique, but she wanted evidence rather than assumptions. To better understand the scope of the problem, she developed a patient survey to collect data on what she calls "ghost approvals"- situations in which an insurance company technically approves coverage for a medication, yet patients still face barriers that prevent meaningful access.
These barriers can include unaffordable out-of-pocket costs, specialty pharmacy requirements, PBM routing restrictions, shipment delays, and other administrative obstacles that leave an approved medication effectively out of reach.
At PUTT, we applaud Payton for taking the initiative and becoming her own advocate. Yet her story also illustrates a much larger problem. It highlights why PBM reform matters and why policymakers, regulators, and healthcare stakeholders must take a closer look at the gap between insurance approval and actual patient access.
When insurers and PBMs control where medications can be filled, how they are dispensed, and how much patients must pay, the consequences are felt most acutely by the people whose health depends on those medications. The result is a system in which patients can receive approval on paper while still struggling to obtain the treatment their physicians have prescribed.
As a patient, advocating for yourself is one of the most powerful things you can do. Ask questions, document barriers, appeal decisions, and speak up when a system is not working.
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