Payton Herres is only alive today thanks to the generosity of an organ donor and his family, who gave her his heart 12 years ago.
The 25-year-old, from Dayton, Ohio, was born with a rare congenital heart disease, Ebstein’s anomaly, which affects the tricuspid valve on the right side of the heart. The condition, which causes blood to leak backward into the right atrium — upper right chamber — of the heart, can lead to heart failure.
When she was 11 years old, following years of health problems, Herres was left with no choice but to undergo a heart transplant in March 2012.
The surgery was successful; the recovery long and often painful, but Herres credits her donor for giving her a “second chance” at life.
Since the surgery, Herres has been on a combination of medications to ensure her body doesn’t reject that heart.
This year Herres had to fight the health insurance company she’s been with all her life, Anthem Blue Cross Blue Shield, when they stopped covering her life-saving medication.
If she doesn’t get her medication, it could prove fatal.
In February, the company wrote to inform her that one of the medications she has taken since 2013, everolimus, was “no longer medically necessary,” according to paperwork seen by The Independent.
Herres’ doctors prescribed the drug everolimus because it prevents the body from rejecting an organ transplant. It also helps protect against coronary artery disease, a major risk after transplant operations. Everolimus, when taken with the immunosuppressant cyclosporine, had been working well for Herres since 2013.
“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?”
The denial was especially gut wrenching because the heart was gifted to Herres by a 24-year-old man who died suddenly.
She will never be able to repay her donor for his gift, but Herres recently sent his mother a blue teddy bear sprinkled with stars, with a recording of the sound of his heartbeat.
“I’ve lived 13 and a half years with my gift of a heart,” Herres told The Independent. “I’ve done everything right. And now, I feel like Anthem is ripping it away from me.”
“They trusted that his heart would be cherished and protected,” said Herres of her donor’s family. “And now Anthem is gambling with it. If they let me go into rejection, they’re not just risking my life — they’re letting his gift go to waste.”
Since the transplant in 2012, doctors have tried different medications to stop Herres’ body from rejecting the heart. Some of them made her incredibly unwell and it took years to find a combination that worked.
“For the past 12 years I’ve survived because of one critical combination of medications,” Herres said. “This wasn’t some random choice — it was prescribed by Cincinnati Children’s Hospital Medical Center after I had rejection and even ended up hospitalized from serious side effects on other drugs.”
Herres, who works for a faith-based non-profit, received the first denial letter from Anthem in February. In the months that followed, she did everything she could to get to the bottom of the decision, including going down the official appeals process, but the company would simply come back with more rejections, she said.
Meanwhile, her medication was running out.
“If I don’t have everolimus, I could lose the heart that saved my life,” Herres said of the medication she must take twice a day. “Anthem knows this — and still, they block me. I even begged to pay out of pocket, and one of their representatives hung up on me.”
Taking matters into her own hands, Herres launched a social media campaign and asked friends to get behind her.
“Make noise. Let them know the world is watching,” she wrote. “No heart transplant patient — and no donor family — should ever be treated this way.”
Her post was shared thousands of times, including on Anthem’s Facebook page, where supporters of Herres’ shared her story in comments on every social media post the company shared.
It appears to have had some effect. In mid-September, Anthem contacted Herres’ doctors and informed them that the medication had been approved.
When contacted by The Independent, Anthem said the initial denial was “based on medical guidelines” but the company apologized and confirmed it has since approved Herres’ medication.
“The initial denial of coverage for everolimus, and the appeal decision, were based on medical guidelines that did not fully reflect Ms. Herres’ treatment history,” an Anthem spokesperson said. “We have since approved the medication, and we are truly sorry for the stress and frustration this caused her. We are reviewing this case to strengthen our processes and ensure future reviews better consider the individual needs of our members.”
But now Herres faces her next battle against the company, which raised her copay to $350 for a 30-day supply, or $1,000 for a 90-day supply. Before the hike, Herres, supported by her parents, would pay around $180 for a 90-day supply.
The new copay is simply unaffordable.
“Instead of Anthem covering the medication after my deductible, I now have to pay $350 every month,” said Herres.
At the moment, the only way Herres can afford her medication is by bypassing her insurance completely and using GoodRx coupons, which bring the cost down to $88.66 for a 30 day supply–but it’s far from reliable.
“The scary part is that these coupons aren’t guaranteed. They can change [the price] or disappear at any time,” said Herres. “If that happens, I could never afford those prices, and that terrifies me.”
Herres says she has been left with no alternative but to look for a new insurer, but like many Americans, the state of the health insurance industry in the U.S. worries her deeply.
“I’ve cried so much this past month I feel broken,” Herres said. “Meanwhile, Anthem is a multibillion-dollar company making record profits while leaving me to panic over whether I’ll survive the month.”
“It’s frustrating that Anthem believes it knows better than my heart transplant doctors, who have been managing my care for over a decade.”
