Payton Herres was 11 when she received a donated heart in 2012. Fifteen years later, at 26, she was fighting to access the anti-rejection medicine that helps keep her donor heart working, with her case eventually reaching billionaire Mark Cuban.
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Herres, now 26, was born with Ebstein’s anomaly, a rare congenital heart condition affecting the tricuspid valve on the right side of the heart. According to The Independednt, the condition can cause blood to leak backwards into the right atrium and can eventually lead to heart failure.
After years of health problems, Herres underwent a heart transplant when she was 11. The surgery was successful, but it left her dependent on a combination of medicines to protect the donated heart.
That combination became the centre of a dispute with her health insurer. Herres said her insurance company stopped covering everolimus, a medicine she had been taking since 2013 to help prevent organ rejection. She appealed the decision and turned to social media when her efforts did not resolve the problem. Her story eventually reached billionaire entrepreneur Mark Cuban, whose pharmacy began supplying the drug at a much lower cost.
Medicine she had relied on for years
Herres had been taking everolimus along with the immunosuppressant cyclosporine. The combination had worked well for her after doctors tried other medicines that made her seriously unwell.
In February, her insurer informed her that everolimus was considered 'no longer medically necessary'. Herres said the decision shocked her because the medicine had been part of her treatment for years.
“It just blew my mind,” Herres recalled after receiving the letter. “I'm like, so you want me to go into rejection and die? Is that what you're saying? Because it's not medically necessary?,” she told The Independednt.
