“I literally almost ran out of my medication because it just kept coming back with denials and delays,” said Herres, who explained she couldn’t use different medication as she had experienced strong side effects to other drugs that put her in the hospital.
Despite eventually getting coverage again after multiple appeals, she now is faced with a copay higher than what she had been paying for more than 10 years — making the drug cost-prohibitive to Herres if she didn’t have outside support in getting it.
“When I was almost running out of meds, I would cry myself to sleep,” Herres said.
Herres shared her denial letters with the Dayton Daily News, as well as signed a HIPAA release form for Anthem to allow the insurance company to discuss her case.
Born with a heart that would grow too big
Herres was born with a congenital heart defect called Ebstein’s anomaly that made it harder for her heart to work and caused her heart to grow larger.
Subsequent health issues also caused her heart to beat at dangerously fast rates.
Credit: Bryant Billing
Credit: Bryant Billing
She was also diagnosed with Wolff-Parkinson-White (WPW) syndrome, which is where there is an extra pathway in the heart for signals to travel between the heart’s upper and lower chambers, according to the Mayo Clinic. This causes a fast heartbeat, and changes in the heartbeat can make it harder for the heart to work as it should.
As a child, she struggled with her health because of her heart defect and the subsequent issues that arose from it.
“There were some struggles,” Herres said about the time before she got her heart transplant. “I would have to go to the emergency room because I would go into supraventricular tachycardia, which made my heart go 250 beats per minute.” Her resting heart rate should have been between 60-100 beats per minute.
Then, in 2011, Herres developed a dry cough, and what some doctors initially thought was bronchitis or asthma turned out to be heart failure, she said.
“They misdiagnosed me until I went to my pediatric cardiologist, and he said, ‘Your heart’s really enlarged. It’s pushing your lungs and trachea.’ That’s why I couldn’t breathe,” Herres said. “And my heart function was really bad, and they found a blood clot inside my right atrium.”
Herres’ family took her to a specialist to see if her birth defect could be fixed, but by then, her heart was too weak and doctors believed she wouldn’t survive the surgery.
That was when Herres was put on the transplant wait list for a heart.
“I waited only nine days, and I received my new heart on March 18, 2012,” Herres said.
‘Off-label’ prescriptions
Since then, she has used everolimus, specifically the brand Zortress, for more than a decade to keep her body from rejecting her donor heart. It is an immunosuppressant medication approved by the Federal Drug Administration to prevent organ rejection in adult kidney and liver transplants.
The fight with Anthem began after the health insurer denied coverage in February 2025 after Herres had already been using the medication for more than a decade.
Since the FDA label did not specifically include heart transplants as one of the conditions the drug is used for, her doctors were prescribing the drug to Herres “off label.”
This became the reasoning for coverage denials from Anthem and CarelonRx Inc. — Anthem’s mail order pharmacy, which also provides pharmacy benefit management services for Anthem — between February and September 2025.
Prescribing drugs off label is a legal and common practice among doctors occurring in 21% to 32.3% of prescriptions overall, according to clinical research published in the Journal of the American Medical Association and the Journal of Clinical Psychopharmacology.
Prevalence of off-label prescribing varies among the types of drugs with one review finding off-label use was highest among cardiovascular medications — excluding antihyperlipidemic and antihypertensive medications — constituting 46% of those prescriptions.
Drug manufacturers also may avoid updating the FDA labels for their drugs due to legal, regulatory and financial barriers, such as having to conduct additional clinical trials.
Months of denied coverage, challenges
In the midst of appeals processes, the family of the person whose body provided the donor heart also became involved in Herres’ fight, helping to advocate to get the medication she needed to protect her heart.
“The heart I live with belonged to a 24-year-old man named Christian, and his mom, Mary, has stayed in my life and cares deeply about protecting the heart her son donated,” Herres said.
After a number of appeals and additional help from the Cleveland Clinic, her employer’s benefits consultant, and other companies committed to lowering drug costs and reversing claims denials, she was able to get approved for the drug in September 2025.
The initial denial of coverage for everolimus in February 2025, and the appeal decision, did not take into account Herres’ treatment history, according to an Anthem spokesperson.
“We have connected with Ms. Herres several times since September to let her know that we have approved her medication, and to explain her plan benefits and the external review process,” an Anthem spokesperson said. “We also reminded her about the personal pharmacy contact we provided, and that they are available to work with her on her pharmacy needs.”
Since everolimus is considered a specialty drug, it also comes with a high cost.
Herres said she paid $180 for a 90-day supply of the medication, the last time being in November 2024.
Even with getting the drug reapproved by Anthem, through a retail pharmacy, the cost is more than $1,300 for a 90-day supply, according to Herres.
“Under her health plan, the copay is cheaper if the prescription is filled via our mail order pharmacy instead of a retail pharmacy,” a spokesperson said.
Figures told to the Dayton Daily News off the record by Anthem were still greater than what Herres said she had previously been paying prior to her denial in February 2025. Herres confirmed the cost for a 90-day supply would be about $400 through the mail order pharmacy, but Herres is on other medications and the costs add up quickly, she said.
Anthem’s mail order pharmacy CarelonRx has caused her issues in the past, Herres said, such as delivering medication to the wrong address or delayed deliveries.
“We understand her concerns with the mail order and have offered a point of contact with our mail order pharmacy should she have any questions or concerns,” an Anthem spokesperson said.
Herres has tried to get a lower copay, but her efforts to get an exception to the copay have come up short.
“Ms. Herres requested an exception to the medication’s cost tiering, but changes to copay tiers are not possible under her health plan,” a spokesperson for Anthem said. “In addition, her request does not qualify for an external review because we have already approved the medication and her request was for a benefit change, which is not eligible for such a review.”
Trends in earnings
It’s not clear what prompted the sudden strict interpretation of coverage guidelines for Herres’ case since she had been on the medication for more than a decade, but the parent company for Anthem, Elevance Health, has reported decreasing operating margins despite growing revenues by the tens of billions, according to its annual earnings report.
For 2024, Elevance Health’s operating revenue was $175.2 billion with earnings of $7.9 billion and an operating margin of 4.5%.
For 2025, Elevance Health’s operating revenue was $197.6 billion with with earnings at $7.2 billion and an operating margin of 3.6%
Anthem did not respond to a direct question of whether the high cost of other drugs, like GLP-1 medications — which help regulate blood sugar and promote weight loss — led Anthem to look at ways to save money through other measures, such as denying coverage for “off-label” drugs.
In just looking at Elevance Health’s health benefits portion of its earnings report — under which is where health plans like Herres’ would fall — the business reported declines in earnings and operating margins from 2024 to 2025. It also reported operating losses in just the last three months of 2025.
Under health benefits in 2024, its operating revenue was $150.3 billion, its earnings were $6.2 billion, and its operating margin was 4.2%
Under health benefits in 2025, its operating revenue was $167.1 billion, but its earnings were $4.2 billion and its operating margin was 2.5%.
For the final quarter of 2025, Elevance Health reported an operating loss of $200 million despite having a revenue of $41.8 billion.
CarelonRx’s portion of Elevance Health’s report showed higher earnings in 2025 compared to 2024, including:
- In 2024, its operating revenue was $53.9 billion, with earnings of $2.9 billion and an operating margin of 5.4%.
- In 2025, its operating revenue was $71.7 billion, with earnings of $3.4 billion and an operating margin of 4.7%.
Since the increase in the earnings was still not as great as the increase in overall operating revenue, CarelonRx still saw lower operating margins in 2025 compared to 2024.
Continuing to push for affordable copay
Herres is continuing to seek external reviews with Anthem in order to gain a cost exception to her copay, as well as to use a retail pharmacy at an affordable price.
Currently, she is getting her medication through Cost Plus Drugs and it is being paid for by the company’s co-founder and billionaire Mark Cuban, who also starred on the show “Shark Tank,” as well as by Warris Bokhari, CEO and co-founder of Claimable, a company that challenges denied health claims. They are also helping to advocate for lower costs.
“I don’t want someone (else) to pay for it forever,” Herres said. “I don’t feel right about that.”
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