‘Immoral,’ ‘barbaric’ for insurer to deny cancer therapy, says judge who had same cancer

Hi-tech “Proton Pete” comes to Baptist Health South Florida

“Proton Pete,” a 220-ton proton beam cyclotron – a machine that destroys cancer tumors – arrives at its Baptist Hospital Miami home on Tuesday, June 14, 2016. It will be part of the future Miami Cancer Institute, which is expected to draw cancer p

“Proton Pete,” a 220-ton proton beam cyclotron – a machine that destroys cancer tumors – arrives at its Baptist Hospital Miami home on Tuesday, June 14, 2016. It will be part of the future Miami Cancer Institute, which is expected to draw cancer p

A federal judge in Miami removed himself from a case on Monday after saying that he could not be impartial in deciding a lawsuit that challenges UnitedHealthcare, one of the nation’s largest health insurance companies, over its denial of coverage for a patient who sought cutting-edge treatment for prostate cancer.

Calling it “immoral and barbaric” to deny a patient proton beam radiation therapy for cancer if available, U.S. District Judge Robert Scola withdrew from the case after citing his personal experience with prostate cancer in 2017, noting that he had consulted with top medical experts during the ordeal.

“All the experts opined that if I opted for radiation treatment, proton radiation was by far the wiser course of action,” Scola wrote. The judge added that he opted for surgery, but that “those opinions [are] still resonant.”

Scola further cited a “close friend” who was diagnosed with prostate cancer in 2015 and paid $150,000 out-of-pocket for proton beam therapy. It was only upon threatening a lawsuit, Scola said, that the health insurer, UnitedHealthcare, reimbursed his friend.

The case has been re-assigned to U.S. District Judge Ursula Ungaro. But Scola’s recusal is unusual and remarkable for its candor. Another federal jurist, U.S. District Judge Federico Moreno, had withdrawn from the case before Scola, citing a more common conflict: Moreno is friends with the plaintiff, Richard Cole, a prominent attorney in Miami.

Cole, 71, was diagnosed with advanced prostate cancer in spring 2018. He said he sought care at Baptist Health South Florida’s Miami Cancer Institute, which operates the region’s only proton beam therapy center and formed an alliance with New York’s renowned cancer hospital, Memorial Sloan Kettering.

Prostate cancer can be treated with surgery or radiation, in addition to other therapies. Cole said he was a candidate for surgery, but that he would have needed radiation therapy in addition to surgery.

Doctors at Baptist Health and Sloan Kettering advised Cole to undergo proton beam therapy because it blasts highly charged proton particles at tumors without destroying surrounding healthy tissue — leading to fewer side effects, and a faster recovery.

“It offered me the best hope,” Cole said.

But Cole’s insurer, UnitedHealthcare, refused to authorize the treatment, calling proton beam therapy “experimental and investigational,” said Stephanie Casey, a partner with the firm Colson Hicks Eidson who is representing Cole in the lawsuit.

UnitedHealthcare’s denial caused Cole to delay his care for months, he said.

“I was frustrated and frightened,” Cole said. “Any time anybody tells you that you have cancer, it’s not a good day. Then to be told they had to delay treatment because the insurer hadn’t or wouldn’t approve it made it a worse day.”

Maria Gordon Shydlo, communications director for UnitedHealthcare, provided a written statement in response to questions about the insurer’s coverage of proton beam therapy for prostate cancer.

“UnitedHealthcare bases its medical policies and coverage decisions — including for proton beam therapy — on the prevailing published clinical and scientific evidence,” Shydlo said.

Cole, who is a partner in the Miami law firm Cole Scott & Kissane, said he fought UnitedHealthcare’s denial but decided to pay for the treatment himself while the insurer’s appeals process ran its course. The cost was $85,000 for about two months of treatment, he said.

Cole’s complaint alleges that UnitedHealthcare denied coverage of proton beam therapy because it’s more expensive than traditional radiation treatment.

Scott Warwick, executive director of the nonprofit National Association for Proton Therapy, said that’s not always the case. Warwick said proton beam therapy can be equal to the cost or up to two times the cost of traditional radiation therapy, depending on the cancer diagnosis and the patient’s treatment plan.

Warwick said a survey of the association’s member centers showed that proton beam therapy is denied by commercial health insurers about half the time a claim is made. But Medicare, he said, offers broad coverage of proton beam therapy.

“There’s definitely a schism,” Warwick said of the difference between Medicare and commercial insurers’ coverage of proton beam therapy.

In January, about the time that UnitedHealthcare issued its final denial to Cole, the company updated its coverage policy regarding proton beam therapy. Cole filed suit in April and is seeking class-action status.

“The purpose of pursuing this as a class action is to effect change,” said Casey, the attorney representing Cole, “and to recover benefit to potentially thousands of people nationwide who have been denied benefits that they were entitled to.”

According to Cole’s lawsuit, up until Jan. 1, 2019 UnitedHealthcare had held to a blanket policy of denying proton beam therapy for prostate cancer regardless of a patient’s individual circumstances or medical needs. After Jan. 1, 2019, UnitedHealthcare’s policy acknowledged that proton beam therapy can be effective for prostate cancer.

But the company’s updated policy states that proton beam therapy and the more traditional intensity-modulated radiation therapy “are proven and considered clinically equivalent for treating prostate cancer” and that medical necessity will be determined based on the terms of the insured person’s plan.

Casey said Cole’s lawsuit seeks to have UnitedHealthcare re-process all claims for proton beam therapy for prostate cancer filed prior to the policy update in January. It’s not clear how many individuals may be affected if Cole’s lawsuit prevails.

About 11,000 patients received proton beam therapy for a variety of medical conditions in 2017, Warwick said. But the treatment is becoming more popular.

There are 31 operational proton beam therapy centers in the United States, Warwick said. Florida is home to four proton beam therapy centers, with three more planned to open in the coming years, including one at the University of Miami Health System’s hospital in the Civic Center.

For Cole, the fight to have UnitedHealthcare cover proton beam therapy for prostate cancer is about “principle,” he said.

“They were relying on the fact that some people would get tired of it and just drop out,” Cole said. “Remember, you’re also sick at the same time. So you’re not exactly in a fighting mood.”

Cole said he has also been meeting with his firm’s insurance broker to consider a change in health insurers for his group plan, which covers about 1,000 people. And he has pledged to donate any award he receives from the lawsuit to the Miami Cancer Institute.

No matter how his lawsuit with UnitedHealthcare ends, though, Cole considers himself a winner in the only fight that really mattered: the one for his life.

About three months after he completed proton beam therapy for his prostate cancer, Cole said he received good news from his doctor.

“All of the tests have resulted in my being cancer free,” he said. “I’m very relieved.”

Miami Herald staff writer Jay Weaver contributed to this report.

Daniel Chang covers health care for the Miami Herald, where he works to untangle the often irrational world of health insurance, hospitals and health policy for readers.