Editor's Note: This story is part of a partnership with ProPublica and reporters Maya Miller and Robin Fields.
A Michigan lawmaker has introduced new legislation, moved by a Scripps News and ProPublica joint investigation into the insurance company that denied a man coverage of cancer treatment, despite his state’s decades-old requirement that state health plans cover drugs for cancer.
“Look, when people are fighting cancer, they need every possible tool in the toolbox to be able to beat that cancer,” state Sen. Jeff Irwin, of Ann Arbor, told Scripps News. “And it should be their doctor, not their insurance company, who's deciding what course of treatment makes sense for that,” he said.
If enacted, Senate Bill 738 would explicitly require insurers to cover a new generation of cancer treatments, specifying that gene therapy and immunotherapy must be covered. The change could ultimately impact many cancer patients across Michigan — but it comes too late for Forrest VanPatten, whose story was at the center of our joint investigation.
In a tearful interview with our Scripps News Grand Rapids station just days before he died in February 2020, the 50-year-old father of two said he felt like his insurance company was casting him aside.
"I feel like I'm being ignored, left out to die, basically,” VanPatten said.
His medical team had just made one final plea to try to get his insurer to cover a clinically proven cancer treatment called CAR-T cell therapy, but VanPatten said he had become accustomed to the same response.
“Everything that gets processed through the insurance company is just a rejection, rejection, rejection,” VanPatten said. “We need to push and push and push because there's nothing else.”
VanPatten died days later, not knowing Michigan had long required health insurers to cover cancer drugs, with a law on the books since 1989.
Through internal emails and company whistleblowers, our joint investigation from this past November revealed that VanPatten’s insurer, Priority Health, thought it had found a semantic workaround to justify denying him coverage despite that law. Priority Health’s senior counsel wrote to executives that if they called the type of treatment VanPatten needed “gene therapy” instead of a “cancer drug," and they “would have a defendable position to not have to 'legally' provide coverage ... under Michigan law.”
SEE MORE: Top Michigan insurance regulator: Cancer treatments must be covered
Considered a breakthrough treatment that was decades in the making, CAR-T cell therapy involves collecting a cancer patient’s own immune cells, genetically modifying them, and then putting them back into the body to fight the disease. Since at least November 2017, the FDA has included gene and cell therapies in its definition of a “drug.”
“I think the scientific evidence supported it,” Dr. John Fox, Priority Health’s former associate chief medical officer, told Scripps News in our November report. “If you can think of another reason besides the money, I can’t,” he said.
Just this past January, Scripps News reported that the state issued an official notice reminding insurance companies that, by law, they cannot deny coverage for clinically proven treatments, “including genetic and immunotherapies.”
Now, if Michigan Senate Bill 738 is passed, it would specifically add those words to the state law. The bill even explicitly mentions the treatment that Forrest VanPatten’s doctors said he desperately needed but never received: "CAR-T cell therapy.”
“We already had a law that was supposed to protect our residents from bad decisions by insurance companies when they were fighting cancer,” Sen. Irwin told Scripps News after he introduced the bill. "I want to make very clear in the law that these gene therapies, just like other cancer drugs, need to be covered when they're prescribed." VanPatten’s insurer, Priority Health, previously told Scripps News it began covering that therapy several years ago, sometime after his death. When we reached out to the company after the new bill was introduced, company spokesperson Mark Geary provided a written statement: “Priority Health is compliant with all existing federal and state laws ... We also stand ready to continue to work with lawmakers and regulators in Michigan to find ways to offer Michiganders affordable access to effective, evidence-based treatments and procedures.”
If his legislation passes, Sen. Irwin says any gray area in the law would disappear, as would the possibility that another cancer patient in Michigan would have to endure the rejections that Forrest VanPatten did.
“This person's last chance to try these gene therapies and see if it could save their life was denied,” Irwin said. “Unfortunately, that individual is now passed, but we need to make sure that an insurer doesn't employ a creative interpretation of this law to deny someone else coverage,” he said.
The bill has been referred to the Committee on Finance, Insurance, and Consumer Protection, of which Sen. Irwin is a member. His office told Scripps News it may be discussed after the state legislation returns from recess in April.
Forrest VanPatten’s wife, Betty, told Scripps News she hopes the bill passes but had mixed emotions when she heard it would spell out that the coverage for the type of treatment her husband never received must be covered in her state.
“I'm very happy that they put that in there ... and that this will never happen again,” she said. “It's just that they should have covered it four years ago. It was already a law,” she said.
Email Scripps News National Investigative Producer Carrie.Cochran@Scripps.com and National Investigative Correspondent Catie.Beck@Scripps.com with questions or tips.
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