This story is part of a partnership with ProPublica and reporters Maya Miller and Robin Fields.
Forrest VanPatten was diagnosed with an aggressive form of lymphoma in July 2019. That same month, he turned 50 years old. Standing at 6 foot 8 inches tall, the former iron-pourer and high school basketball star from just outside Grand Rapids, Michigan, was up for the fight.
He was accustomed to being the one to provide for family and be there for friends, but now they rallied around Forrest VanPatten, who, even while he battled pain, was known for getting them all to laugh.
"He was just a big, big being, but his personality was bigger,” Betty VanPatten, his wife of 26 years, said. “He was the light.”
That light went out, she said, just days after their insurance company denied coverage of a clinically proven treatment, which his doctors said was his last shot at extending his life. Betty said you could see in his eyes how that news impacted him.
“I rarely see him give up,” she said. “There was always hope. There was always tomorrow. And when they denied it, that was the worst possible thing they could’ve done to him.”
Scripps News Grand Rapids interviewed Forrest VanPatten just days before he died.
“I feel like I’m being ignored, left out to die,” he said in February 2020.
Forrest's medical team had just made one final plea to try to get his insurer to overturn its decision, but Forrest VanPattent said he had become accustomed to the same response.
“Everything that gets processed through the insurance company is just a rejection, rejection, rejection,” he said. “We need to push and push and push because there’s nothing else.”
Forrest VanPatten never received that approval. He died not knowing his home state of Michigan had long required health insurers to cover clinically proven cancer drugs.
ProPublica, which partnered with Scripps News for this project, turned up dozens of cases around the country where health insurers have refused to pay for high-stakes treatment or procedures, ranging from emergency surgeries to routine newborn care, all in violation of state laws.
How insurance companies make these decisions is often shrouded in secrecy, but Scripps News was given a rare window – through insider interviews and internal emails – into the calculations that went into Forrest VanPatten's denial. ProPublica unearthed troubling new details about why his insurance company, Priority Health, abandoned him at his most critical hour.
Inside Priority Health
Dr. John Fox was a vice president and associate medical director at Priority Health in 2017 when the type of cancer treatment Forrest VanPatten would desperately need was approved by the Food and Drug Administration. He took part in high-level discussions about whether the company should cover it.
“In my 20-plus years of doing this, this looked like a substantial improvement over the existing alternatives for patents who really had no other treatment options," Fox said.
The breakthrough treatment, which was decades in the making, is called CAR-T cell therapy. It involves collecting a cancer patient’s own immune cells, genetically modifying them, and then putting them back into the body to fight the disease. At the time it was approved, one study showed 51% of patients had complete remission after an eight-month period. In another study published in 2022, 43% of patients treated with the therapy survived over the course of its five-year study period.
But, Fox said leadership at Priority Health was focused on the costs, not what it could mean for patients.
“There were estimates that the cost of a hospitalization and the drug was going to be a million or more,” he said. “There were lots of dollars at stake here."
ProPublica reporters spoke to other former employees of Priority Health who corroborated Fox’s account.
Internal emails show that for years, Fox did urge his fellow executives to cover the therapy, writing in August of 2018 that because of the prevailing medical evidence “we recognize we have to cover these therapies.”
In January of 2019, he wrote that the drugmakers “say we're the only regional or national health plan not covering."
He also suspected a state law on the books since 1989 might require they cover it. Michigan mandates that health insurers cover all FDA-approved cancer drugs.
But emails reveal Priority Health thought they had found a way to get around covering it. When Fox asked the legal department to weigh in on whether the treatment needed to be covered, Priority Health’s senior counsel responded that if the company called it a “gene therapy” instead of a “cancer drug,” they “would have a defendable position to not have to 'legally' provide coverage...under Michigan law.”
Fox said he asked senior leaders to consult the state, but he was shut down.
"We chose not to seek an answer to that question,” he said. “I can't say for certain, but I think they were concerned that we might be told that we would have to cover it.”
Priority Health’s legal memo would come back to haunt VanPatten a few years later. In February of 2020, he received a denial letter from Priority Health. “Gene therapy, intended to restore defective or insufficient structural or functional proteins, is not a Covered Service,” it stated. “We are not able to approve this request.”
Since at least November 2017, the FDA has included gene and cell therapies, which it classifies as “biological products,” in its definition of a “drug.”
Fox said he wasn’t aware of the definition at the time, but wonders what would’ve happened if the company had asked state regulators to weigh in.
Instead, he said Priority Health’s decision to deny coverage for this treatment came down to the price tag.
“Is there any other reason?” he said. "If you can think of another reason besides the money, I can’t. And I think it was about the money.”
Fox left Priority Health in 2019, frustrated, he said, by its ongoing refusal to cover CAR-T therapy and for putting profits over patients.
Priority Health provided a statement to Scripps News and ProPublica explaining its decision not to cover the therapy, writing: “When the FDA first approved CAR-T cell therapy, there was a lack of consensus in the medical community regarding the treatment. Major life-threatening complications and side effects were common, with a high rate of relapse.”
But Fox said the safety and efficacy of this treatment wasn’t the key factor in the company’s decision.
“The reality is we weren’t having those discussions,” he said. “We were having discussions about what the cost of these treatments were.”
Fox said that by 2019, the company was already covering other gene and cell therapies for cancer. By denying coverage for CAR-T cell therapy, he said, the company was violating its own principles.
“It was FDA approved. It was for cancer therapy,” Fox said. “It was in the National Comprehensive Cancer Network guidelines with a Category 2A recommendation, which means that there is uniform consensus that this is an appropriate treatment.”
Policing Insurance Companies
State insurance regulators across the country have the authority to investigate cases like Forrest VanPatten’s, where insurance companies appear to violate state law. But it seldom happens.
In Michigan, where coverage of cancer treatments has been mandated for 34 years, not once has an insurance company been cited for violating the law.
Scripps News asked Michigan’s Department of Insurance and Financial Services, which is the agency responsible for making sure insurance companies comply with state laws, whether gene and cell therapies for cancer are required in Michigan.
The agency’s communications director said they would need an official complaint or appeal by a patient before they would respond, writing, “We review patients’ appeals of coverage determinations based on the facts of each case and the standards set forth under MCL 500.3406e.”
Betty VanPatten said after Forrest died, she was too distraught to file a complaint.
Too Late for the VanPatten Family
For Betty VanPatten and her children, Madison and Donovan, their hope in telling this story is to alert other families about state laws designed to protect them.
“We're just a small family of four in a little bitty village, but it's happening across the country," she said. “Nobody should go through this.”
Priority Health told Scripps News and ProPublica the company now covers the cancer treatment her husband needed. Betty VanPatten said she just wished that decision had come much sooner.
“We joked about we were going to sit and be old people on the front porch together, and I don't have that,” she said. “My kids didn't have their dad at their wedding. My daughter didn't get her dance with her daddy.”
“I lost so much time,” she said.
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