In a stark illustration of the vulnerabilities within the U.S. healthcare system, 25-year-old Payton Herres from Dayton, Ohio, faces an uncertain future despite a life-extending heart transplant received as a child. Herres, who has thrived for over 13 years with a donor heart, now grapples with skyrocketing costs for the immunosuppressant medications essential to its survival.
The denial and subsequent partial reversal by her insurer, Anthem Blue Cross Blue Shield, highlight the precarious balance transplant patients maintain between medical necessity and financial ruin. This case underscores broader challenges in post-transplant care, where lifelong drug regimens can cost thousands annually, often clashing with insurance policies that prioritize cost over individualized treatment.
A Lifelong Battle Begins: Diagnosed with Ebstein’s Anomaly
Payton Herres’ medical journey started at birth with Ebstein’s anomaly, a rare congenital heart defect affecting the tricuspid valve on the heart’s right side. This condition causes the valve to form abnormally low in the heart, leading to blood leakage back into the right atrium. Over time, it enlarges the right atrium, weakens the right ventricle, and increases risks of arrhythmias, heart failure, and sudden cardiac death. According to medical experts, Ebstein’s anomaly occurs in about 1 in 200,000 live births, making it exceptionally uncommon and complex to manage.
Payton Herres’ early years were marked by relentless health crises. As a toddler, she endured multiple surgeries and hospitalizations to address the defect’s progression. By age 10, her condition had deteriorated severely; her heart could no longer pump efficiently, leaving her bedridden and dependent on intravenous medications. “I was essentially dying,” Herres recounted in recent interviews. Doctors at Cincinnati Children’s Hospital Medical Center determined that only a heart transplant could save her life.
The turning point came in March 2012, when Herres, then 11 years old, received a donor heart from a 24-year-old man who had died suddenly in a car accident. The donor’s family, upon learning of the match, chose to honor his legacy by gifting the organ. This act of generosity gave Payton Herres not just survival, but a renewed sense of normalcy. Post-transplant, she returned to school, pursued hobbies like art and music, and eventually secured employment with a faith-based nonprofit organization focused on community outreach.
Thirteen and a half years later, Herres remains profoundly grateful to her donor. Each year, she sends the donor’s mother a blue teddy bear embedded with a recording of her transplanted heart’s beat—a tangible symbol of the life their loved one continues to sustain. “He gave me a second chance,” Payton Herres said. “Without that heart, I wouldn’t be here advocating for others or living the life I have.” Her post-transplant routine includes rigorous follow-ups, dietary restrictions, and avoidance of infections, all to safeguard the organ. This diligence has allowed her to avoid major complications, a testament to both medical advancements and her personal resilience.
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Yet, the success of any organ transplant hinges on immunosuppressive therapy, a regimen designed to prevent the body’s immune system from attacking the foreign organ as an invader. For Payton Herres, this therapy has been the linchpin of her 13-year survival, but recent insurance decisions threaten to unravel it.
Immunosuppressants Under Siege: The Denial That Jeopardized a Decade of Stability
Since her transplant, Payton Herres has relied on a tailored cocktail of immunosuppressants to suppress rejection. Initial drugs proved problematic, triggering severe side effects including acute rejection episodes that landed her in the hospital. In 2013, her cardiologists at Cincinnati Children’s introduced everolimus (branded as Zortress), paired with cyclosporine, another immunosuppressant. This combination marked a turning point: it effectively controlled rejection while minimizing risks of coronary artery disease, a leading cause of long-term transplant failure.
Everolimus, an mTOR inhibitor, works by dampening the immune response at the cellular level, reducing T-cell proliferation that could target the donor heart. Cyclosporine complements it by blocking calcineurin, further curbing immune activation. For 12 years, this duo has kept Payton Herres’ heart functioning optimally, with blood tests showing stable levels and no signs of graft vasculopathy. “This wasn’t some random choice—it was prescribed after years of trial and error,” Herres explained. “It’s kept me alive and allowed me to build a life.”
The crisis erupted in February 2025, when Anthem Blue Cross Blue Shield, her lifelong insurer, issued a denial letter for everolimus coverage. The rationale: the drug was “no longer medically necessary” under updated clinical guidelines that favored alternative therapies for standard cases. These guidelines, however, failed to account for Herres’ unique history of adverse reactions to other medications. Her doctors submitted detailed appeals, citing peer-reviewed studies and her 12-year track record of success, but Anthem rejected them twice.
As her 90-day supply dwindled, Payton Herres faced a dire countdown. Without everolimus, rejection could onset within weeks, potentially leading to heart failure or the need for another transplant—if one were even available. The organ transplant waiting list in the U.S. exceeds 100,000 patients annually, with hearts being the scarcest resource. Herres pleaded with Anthem representatives to allow out-of-pocket payment, but one call ended abruptly when the agent hung up.
Financially, the stakes were insurmountable. Prior to the denial, Payton Herres paid about $180 for a 90-day supply after meeting her deductible—a manageable copay on her nonprofit salary. Post-approval, Anthem hiked the rate to $350 for 30 days or $1,000 for 90 days, pricing her out entirely. To bridge the gap, she turned to GoodRx discount coupons, securing a 30-day supply for $88.66. But these are not insurance; they fluctuate with pharmacy participation and manufacturer pricing, offering no long-term security. “I’m rationing doses just to get by,” she admitted. “Every day feels like a gamble with the heart that’s kept me going.”
This ordeal exposes systemic flaws in transplant care coverage. Immunosuppressants like everolimus can exceed $10,000 monthly without insurance, and while Medicare covers them for kidney recipients indefinitely, heart patients often lose full support after a certain period if privately insured. Herres’ case, though resolved in part, amplifies calls for policy reform to prioritize patient-specific evidence over blanket protocols.
Rallying for Change: From Social Media Outcry to Uncertain Horizons
Faced with bureaucratic indifference, Herres harnessed social media to amplify her plight. In late August 2025, she launched a campaign under the hashtag #SavePaytonsHeart, sharing raw videos of her appeals process and pleas to Anthem’s executives. “Make noise. Let them know the world is watching,” she urged followers. Posts on platforms like Facebook and Instagram detailed her story, tagging Anthem and garnering thousands of shares, comments, and messages of support from fellow transplant survivors and donor families.
The momentum paid off by mid-September, when Anthem reversed the denial, issuing an apology for relying on “incomplete guidelines.” A spokesperson stated, “We are reviewing this case to ensure our processes better accommodate individual patient needs.” Coverage resumed, but the victory was bittersweet: the elevated copays persist, forcing Herres to explore new insurers amid open enrollment. She worries that future denials could recur, especially as drug prices rise unchecked.
Payton Herres’ advocacy extends beyond her situation. She highlights how such decisions not only endanger patients but dishonor donors. “Anthem is gambling with my donor’s gift,” she said firmly. “No family should watch their loved one’s sacrifice be undermined by a corporation’s bottom line.” Her nonprofit role informs this perspective; she counsels others on navigating healthcare mazes, drawing from her own trials.
Looking ahead, Herres seeks stable coverage and legislative safeguards, such as expanded Medicare protections for all solid-organ transplants. Advocacy groups like the American Heart Association have echoed her concerns, noting that 20% of heart recipients face coverage disruptions within five years. For now, she continues twice-daily everolimus doses, monitoring her heart with quiet determination.
Payton Herres’ story is one of extraordinary endurance shadowed by an unforgiving system. At 25, she embodies the human cost of healthcare inequities, where a donor’s ultimate gift teeters on the edge of affordability. As she fights onward, her voice demands accountability, ensuring that second chances aren’t revoked by first-dollar denials.