This story is part of a partnership with Scripps News.
Forrest VanPatten was 50 and strong after years as a molten-iron pourer when he learned in July 2019 that a hyperaggressive form of lymphoma had invaded his body. Chemotherapy failed. Because he was not in remission, a stem cell transplant wasn’t an option. But his oncologist offered a lifeline: Don’t worry, there’s still CAR-T.
The cutting-edge therapy could weaponize VanPatten’s own cells to beat back his disease. It had extended the lives of hundreds of patients who otherwise had no chance. And VanPatten was a good candidate for treatment, with a fierce drive to stay alive for his wife of 25 years and their grown kids.
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VanPatten didn’t know it, but he also had the law on his side. His home state of Michigan had long required health insurers to cover clinically proven cancer drugs.
He and his family gripped tight to the hope that the treatment promised.
Then, his insurance company refused to approve it.
Across the country, health insurers are flouting state laws like the one in Michigan, created to guarantee access to critical medical care, ProPublica found. Fed up with insurers saying no too often, state legislators thought they’d solved the problem by passing hundreds of laws spelling out exactly what had to be covered. But companies have continued to dodge bills for pricey treatments, even as industry profits have risen. ProPublica identified dozens of cases in which plans refused to pay for high-stakes treatments or procedures — from emergency surgeries to mammograms — even though laws require insurers to cover them.
Companies can get away with this because the thinly staffed state agencies that oversee many insurers typically don’t open investigations unless patients file complaints. Regulators acknowledge they catch only a fraction of violations. “We are missing things,” said Sebastian Arduengo, an assistant general counsel for Vermont’s insurance department.
In the 34 years since Michigan began to require cancer coverage, regulators there have never cited a company for violating the law.
Like most policyholders, VanPatten had no insight into the decision made by his insurer, a nonprofit called Priority Health that covers about a million Michigan residents.
He didn’t know that around the time the therapy won the Food and Drug Administration’s approval, executives at Priority Health had figured out a way to weasel out of paying for it.
Through interviews with former employees and a review of company emails and VanPatten’s medical records, ProPublica was able to crack through the usual secrecy and expose the health insurer’s calculations.
Former employees said the decision not to cover this treatment and a related one was driven almost entirely by their high price tags — up to $475,000. Side effects that could land a patient in the hospital can push the bill over $1 million. Priority Health number crunchers calculated to the penny the monthly cost per policyholder if the company shifted the expense to them: 17 cents. But executives didn’t raise premiums or absorb the extra cost. They decided to save that money.
Patients’ needs weren’t part of the equation, recalled Dr. John Fox, then Priority Health’s associate chief medical officer. “It was, ‘This is really expensive, how do we stop payment?’”
Over Fox’s objections, fellow executives came up with a semantic workaround: These cancer drugs aren’t technically drugs, they argued, they’re gene therapies. All Priority Health had to do was to exclude gene therapies from its policies, and it could say no every time.
Priority Health said in a written statement to ProPublica that it provides compassionate, high-quality, affordable coverage and spends 90 cents of every premium dollar on member care.
“We are committed to making medical innovations available to members as quickly as possible, regardless of cost, as soon as they have been proven to be safe and effective,” Mark Geary, a spokesperson, wrote. The company said it initially didn’t cover CAR T-cell therapy because there was a “lack of consensus” about the treatment’s effectiveness.
“Major life-threatening complications and side effects were common, with a high rate of relapse,” the statement said.
At the time of VanPatten’s denial there was, in fact, already substantial consensus about the medication. In December 2017, the National Comprehensive Cancer Network, then an alliance of 27 leading U.S. cancer treatment centers, spelled out in its guidelines for B-cell lymphomas which patients should receive the therapy and when. VanPatten’s doctor said he met the criteria.
VanPatten’s family signed a privacy waiver giving Priority Health permission to discuss his case with ProPublica. Nevertheless, Priority Health did not respond to questions about his case or whether the company had violated Michigan’s mandate to cover cancer drugs when it refused to pay for his therapy.
VanPatten was disappointed but tried to remain optimistic after the first denial in January 2020. He and his wife, Betty, who worked in medical billing, knew it often took an appeal to coax the insurer to approve care.
In early February, Dr. Stephanie Williams, then the head of the blood and marrow transplant program for Spectrum Health, came to see VanPatten in his hospital room on Grand Rapids’ Medical Mile. It had been more than six months since his diagnosis.
He was sitting up in bed hooked up to an IV. His face, once framed by reddish eyebrows and a signature goatee, was hairless and drained of color. Betty pasted on a tight smile.
Priority Health had denied the treatment again, Williams told them, though she vowed to keep fighting.
When she left the room, VanPatten swung his legs over the side of the hospital bed. He had remained resilient and good-humored through his illness. But at that moment, he felt like Priority Health was treating him like an expense, not a person. It got to him, the idea that the insurer he dutifully paid each month knew this was his only chance and was holding it just out of reach.
He grabbed a tissue box from a tray and hurled it against the wall.
Fox, whom Willams described as the “conscience of the company,” had long been the point person for oncology in Priority Health’s medical department. In his earlier life as a practicing physician, he had trained at the Centers for Disease Control and Prevention as a chronic disease epidemiologist. When he joined Priority Health in 2000, he admired the company’s focus on preventive care and the fact that his bosses encouraged him to build deep relationships with local hospitals and doctors.
CAR T-cell therapy was a breakthrough more than 20 years in the making, and Fox had tracked clinical trials and talked to oncologists about it. By genetically reengineering patients’ own white blood cells, then infusing them back into the body to fight cancer, the treatment helped most participants in clinical trials get into remission within three months.
He knew this would be a game changer for patients. He also knew the law. So when news of the FDA’s approval of the first CAR-T medication, Kymriah, hit his inbox in August 2017, he recalled, “I said, ‘You know, we’re required to cover this. This is a treatment for cancer.’”
But the culture at Priority Health had shifted over the previous year under new leadership to focus on cost savings, Fox and four other former employees said in interviews. The company brought in a new chief medical officer, Dr. James Forshee, in late 2016 from Molina Healthcare, an insurer known for wringing profits out of Medicaid managed care plans.