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mAri Cutter was devastated when she lost her only child, 24-year-old son Christian, to sudden death in 2012.
But she takes solace in knowing that Christian’s heart still beats 13 years later – in the chest of the 25-year-old Ohioan whose life When Cutter donated her son’s organs, she was saved.
However, the feasibility of keeping Christian’s heart beating has fallen into doubt due to recent changes in transplant recipient Peyton Herres. health insurance Coverage for critical antirejection drugs. The changes have made vital, life-sustaining medicines inaccessible.
Hayes, who lives in Dayton, said getting Christian’s heart when she was just 11 years old was the “ultimate gift” — and she even sent her mother a teddy bear with a recording of it beating in his chest. Now, Cutter is joining the Heresy’s fight to make sure her son’s gift continues.
“I will do whatever I can to keep her and my son’s heart happy,” Cutter said. Independent In an emotional joint interview with Heiress. This was the first time they heard each other’s voices.
Even though they’ve never met in person, the 65-year-old mom from Cincinnati stepped up and offered to cover Cost of medicine.
“My son donated all his organs to help people [Herres] a chance to live a good life,” said Cutter. “And for insurance company To do something like that – you know, it’s heartbreaking.”
In the years since Christian’s death, Cutter has also lost her husband and brother.
“I am the only one left,” she said. “But you know, Peyton is there with Christian.”
Christian was the only child of Cutter. He described him as a funny, smart, “wonderful kid”. He was in the Reserve Officers’ Training Corps at the University of Cincinnati for a few years before his life ended tragically.
He died unexpectedly on 17 March 2012.
During Cutter’s darkest days in the hospital, when he learned Christian would not make it, she made the difficult decision to donate his organs.
“If you know your child is going to die, if someone else has a child, and Christians can help them survive…,” she said, crying. “I thought if no one else had to lose their child, this was something I could do. I was willing to do it.”
At the same time, Heiress was in urgent need of a new heart – doctors did not think she would live to her 12th birthday due to a rare congenital heart disease. Ebstein’s anomalyThis condition affects the tricuspid valve on the right side of the heart and causes blood to leak backward into the right atrium – the upper right chamber of the heart – causing heart failure,
Heiress received Christian’s heart the day after his death.
Cutter said that if something happened to her son’s heart, “it would be like reliving the whole thing all over again.”
Since the surgery at Cincinnati Children’s Hospital 13 years ago, Heiress has been on a combination of medications to make sure her body doesn’t reject that heart. Some of them made him incredibly unhealthy and it took years to find a combination that worked.
But this year, Herres — who makes $35,000 a year doing payroll at the faith-based nonprofit — had to fight that health insurance company, Anthem Blue Cross Blue Shield, after it stopped covering one of the life-saving drugs.
In February, the insurer, which is paid for by her employer, wrote to inform Heiress that the drug everolimus was “no longer medically necessary,” according to paperwork previously seen. Independent.
Here’s doctors prescribed the drug everolimus because it prevents the body from rejecting the organ transplant. It also helps protect against coronary artery disease, which is a major risk after a transplant operation. Everolimus, when taken with the immunosuppressant cyclosporine, was working well for Herpes since 2013.
This drug is currently approved by the Food and Drug Administration only for liver and kidney transplant recipients. Campaigning for change through a petition.
More research is needed before everolimus is approved for heart transplant patients, but studies have shown It reduces the risk of rejection, protects the kidneys and slows the progression of cardiac allograft vasculopathy – a form of coronary artery disease unique to heart transplant patients.
“Heart transplant patients deserve the same level of access and protection as other organ recipients,” Herres said. He said his petition calls on the FDA and the drug’s maker, Novartis, to review the evidence.
Nevertheless, after some outcry over his condition, in mid-September, Anthem contacted Hearse’s doctors and informed them that the drug had been approved.
But there was a catch – his copayment more than doubled to $350 for a 30-day supply or $1,000 for a 90-day supply. Before the hike, Heiress, supported by her parents, would pay about $180 for a 90-day supply.
The new co-payment is simply unaffordable for him.
An Anthem spokesperson said in a statement that there was a cheaper alternative – if Heiress used its mail-order service. Independent.
“Purchasing the drug through our mail-order service allows him to obtain a 90-day supply at the same cost as a 30-day supply at a retail pharmacy,” the spokesperson said. “This mail-order option, which he used last year, results in lower out-of-pocket costs.”
But Herres said she hasn’t received clear clarification from Anthem about the pricing outlined in her statement and that she can’t risk the delays in getting her medication that happen with a mail-order service, which could potentially leave a lag between when supplies run out and when they are received for restock via mail.
And many insurers now allow those 90-day maintenance supplies to be filled through local chain pharmacies like CVS and Walgreens at a discounted price.
“What they didn’t share addressed the fact that my out-of-pocket costs increased so much that I had to look outside my insurance to afford the drug,” Herres said. “It has not saved me from huge cost increases, and it is not a simple or completely safe solution to a life-sustaining transplant medication.”
Heiress told Cutter about his ordeal over a phone call. The mother repeated her generous offer to cover the cost of the medication, and, in addition, picked them up and delivered them to Heiress herself.
“When I saw she wanted to pay, it broke me,” Herres said. “It was one of the most beautiful and most wrong things I have ever experienced.”
He said, “It’s beautiful because it shows how deeply she loved me and still loves her son through me. But at the same time, it’s wrong because she’s already been given the ultimate gift.”
At the moment, the most cost-effective way to secure your medicine is to bypass your insurance altogether and use it GoodRx Coupons, which reduce the cost to $234.86 for a 90-day supply – but this is far from reliable.
“The scary thing is that these coupons are not guaranteed. They can change [the price] Or disappear at any time,” Herres said. “If that happens, I’ll never be able to afford those prices, and that scares me.”
Heiress said that she could not rely on Cutter to pay for her medication, nor could she ever repay him for giving her “a second chance at life”.
But to say thanks, Heiress bought a blue star-spangled teddy bear for mom, which plays the sound of Christian’s heartbeat when you press his right paw.
“I let everyone hear Christian’s heart and it brings tears to our eyes every time,” Cutter said. “It’s beautiful. It was a very special gift.”
During their first phone call, Heiress repeatedly thanked Cutter for saving her life.
“I’m forever grateful for Christian and Mary,” Herres said. “They’ve done so much for me, and it breaks my heart that they have to watch me go through this.”
“You don’t need to thank me,” replied Cutter. “I’m grateful that Christian’s heart is beating in your chest.”