Keaton Herzer has spent hours on the phone, daily, trying to get clarity from his insurance company over denials for lifesaving medical treatments. The calls, documented in videos he posted to social media, have become part of his daily routine as he fights cholangiocarcinoma, a rare and aggressive bile duct cancer, which was diagnosed about a year ago.
"[My doctors] said surgery is not an option. 'Unresectable and inoperable' are the terms used to describe that, and prognosis was not very good," Herzer told Scripps News during an interview in his home.
Herzer is one of about 8,000 people diagnosed with cholangiocarcinoma in the United States each year, according to the American Cancer Society. The disease is often detected at later stages and can be difficult to treat.
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"They did an ultrasound and found these giant masses on my liver. One of them was almost 11 centimeters, about the size of a grapefruit. I had another that was lemon or lime-sized, and then just tumors kind of throughout the liver," he described.
After an initial round of chemotherapy failed, Herzer and his medical team shifted their focus to a targeted therapy designed to shrink the tumors, with the ultimate goal of qualifying for a liver transplant.
"This is our north star. This is what we're aiming for because my goal is to survive," Herzer said.
But as his doctors warned, that treatment plan led to repeated insurance denials.
According to documents reviewed by Scripps News, Herzer's targeted therapy was deemed "not medically necessary" by a physician on Cigna's review team, whose specialty was notably listed as obstetrics and gynecology. The denials forced Herzer and his wife, Tori Marsh, to pay more than $150,000 out of pocket, they said, explaining they didn't want to waste time with another round of chemotherapy if it wasn't going to work.
"The message that it sends is we know better than you," Herzer said.
"And your doctors," Marsh added.
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Insurance coverage disputes are not uncommon. According to 2023 data from KFF, insurers offering plans on the federal marketplace denied about 19% of in-network claims. Yet fewer than 1% of consumers appealed those denials.
The appeals process can be complex, time-consuming and, for many patients undergoing treatment, overwhelming. Frustrated and facing mounting bills, Marsh turned to social media. In a LinkedIn post, she asked her network to "hold Cigna accountable for this reckless and harmful decision. A decision that puts Keaton's life at risk."
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The post quickly gained traction, generating hundreds of reposts. Strangers began tagging Cigna and urging the company to reconsider.
Then, days later, Herzer received a call.
"Apparently, I've been cleared. My treatment is now approved. This is crazy; this is a big win," he said in a video update to his followers on social media.
"People were outraged, I think, because it's happened to so many people. A lot of people unfortunately, felt seen," Marsh told Scripps News.
"We're paying our monthly bills. We're following the rules. And the people, the institutions that we trust to do the same thing, are not doing that. I don't think that's vibing with a lot of people," Herzer added.
The couple says they cannot definitively prove that the social media attention led to the reversal -- and in a statement to Scripps News, Cigna wrote, "Social media content is never a factor in coverage decisions."
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However, the process repeated itself when Cigna later denied coverage for Herzer's liver transplant, despite a multidisciplinary team of doctors approving his candidacy.
Again, the couple shared their experience online, posting videos of Herzer waiting on hold to talk to his alleged case manager, who never called him back. Again, posts spread. And again, within days, an approval came through.
Asked what Herzer and Walsh hope insurance companies learn from the kind of social media backlash that derived from their case, Herzer said, "I hope that they learn that we're human beings who are trying to stay alive and access health care that we desperately need, that they are making incredibly difficult to access," Herzer said, encouraging other patients facing denial to advocate for themselves.
"Fight them. Because chances are, you're gonna win." Herzer exemplifies the success of a fight like this, and wants to continue to help. He's running a fundraiser for theCholangiocarcinoma Foundation,planning to climb Mt Ranier and raise $100,000 along the way for cancer patients and research.
In a statement to Scripps News, Cigna acknowledged the broader frustrations patients face navigating coverage decisions. The company said the healthcare system is "complex and too often confusing for those navigating it." However, it did not specifically address why Herzer's initial claims were denied or why an OB-GYN reviewed a cancer treatment case.
Cigna said it is working to speed up its prior authorization process, add more resources for customers and tie a portion of executive compensation to customer satisfaction.
Patient advocates say Herzer's story underscores larger national concerns about prior authorization: a cost-control mechanism insurers use to determine whether treatments meet medical guidelines before approving payment.
Federal regulators and members of Congress have increasingly scrutinized prior authorization practices, arguing delays and denials can jeopardize patient care. Industry groups say the process is necessary to prevent unnecessary or ineffective treatments and control rising health care costs.
