Patients seeking proton therapy get caught in expensive fight

Aug. 05--shares

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Oklahoma City -- After undergoing chemotherapy and surgery to remove her left breast, Hauli Sioux Gray really didn't want to worry about arguing with her insurance company about getting radiation.

Her doctor had prescribed proton therapy with the hope it would reduce the risk that Gray, 34, will experience heart problems in the future from excess radiation. Her insurance company, Blue Cross Blue Shield of Oklahoma, didn't think the more expensive form of radiation was necessary, however, and denied her claim three times.

"If it's just going to be my skin that I have a problem with (because of radiation side effects), I can deal with that," she said. "I'm more worried about my heart."

Gray started proton therapy at ProCure, an Oklahoma City radiation facility, in May, without being sure if anyone would cover it. Gray is a member of the Ponca and Tonkawa tribes, and the Indian Health Service agreed to pay for her care before she completed it in June. Though her therapy was covered, Gray said she wanted to speak for other patients who may not have the same options.

"You have go to war over these things," she said. "It's not right."

Right or not, proton therapy falls smack in the middle of competing priorities and goals for medicine. Most people who have cancer and their families want their insurance to cover any therapy that gives them a chance of survival with as few side effects as possible. On the other hand, insurers are under pressure to keep costs down, both for their own profitability and to avoid higher premiums for all customers.

Studies on proton therapy for breast cancer patients found those who got proton therapy had a 0.4-percentage-point lower risk of a major cardiac problem over 20 years. A 50-year-old woman who got conventional radiation would have a 2 percent chance of having a cardiac problem like a heart attack by age 70. A woman who had proton therapy would have a 1.6 percent chance in that time, which is similar to the risk of a woman who hasn't had radiation.

For every 250 women in their 50s treated with proton therapy rather than conventional radiation, the odds would suggest one fewer serious cardiac problem. Relatively few women in their 30s have either breast cancer or serious heart problems, so there isn't good data on whether the difference is bigger for women of Gray's age.

If it's your heart, it might be worth any expense to reduce the odds you'll be one of the unlucky patients to suffer a side effect. If you're running the numbers, however, you would have to consider whether raising the cost to treat all 250 women is too high a price to prevent one serious side effect, since everyone who has insurance will share in that cost. Costs vary from center to center, but it isn't unusual for proton therapy to cost twice as much as other forms of radiation, because of the high costs associated with equipment.

The American Society for Radiation Oncology recommends proton therapy in limited cases: tumors in the central nervous system, head, neck, liver, eye and some soft tissues of the abdomen; children's cancers; people who have undergone radiation before; and those who have a genetic condition that makes avoiding excess radiation especially important.

For more common tumors, like breast, prostate and lung cancers, it recommends coverage only when a patient is enrolled in a clinical trial, or a registry for comparing outcomes. There isn't enough evidence to be sure that those patients do better with proton therapy.

The National Comprehensive Cancer Network's guidelines also don't recommend proton therapy for most patients with breast cancer, unless an oncologist shows other forms of radiation wouldn't work for a specific patient.

"There are no data to support its routine use and it is very expensive," Rachel Darwin, public relations manager for the network, said in an email.

Unmet expectations

Andrew Knizley, president of the Oklahoma City ProCure center, said ProCure still has a contract with Blue Cross, but the insurer stopped reimbursing for prostate cancer in 2015. Since then, it has become more difficult to get authorization for other types of cancer, he said. The center offered statistics that showed 90 percent of cases had been denied in the most recent quarter.

"Once they did that, we still treated patients, but we had to go through a lengthy appeal process to outside reviewers," he said. "It appears what Blue Cross is trying to do is kill proton therapy."

Blue Cross said all members have access to evidence-based treatment, and a radiation oncologist who doesn't work for the insurer reviews requests for proton therapy.

"The reviewer's decision is based solely on the unique medical evidence of each case," the company said in a written statement. "The external reviewer makes the decision, and BCBSOK accepts the expert opinion rendered by this radiation oncologist."

Michael Rhoades, deputy commissioner of the Oklahoma Insurance Department, said the department only gets involved if a patient appeals after two denials by an insurance company, and one by an independent review organization. There are 14 independent review organizations, and each case is assigned at random, he said. The organizations typically uphold about 85 percent of denials.

"Typically, our involvement is on the tail end," he said.

Last year, the department reviewed 20 cases related to radiation, according to Rhoades. It had reviewed 11 as of early July this year.

"We don't see that that's an unusual number," he said. "These are very complex cases."

Proton therapy typically goes through easily for children's cancer cases, Rhoades said. Adult cases are more precarious, because insurers often see typical photon radiation and proton radiation as equivalent, he said.

Oklahoma law prevents insurers from holding proton therapy to a higher standard of evidence than traditional radiation therapy, Rhoades said.

"We find no evidence that there's any violation under that standard," he said.

Knizley, president of the Oklahoma City ProCure center, argues that requiring studies that show proton therapy is more effective than cheaper options would violate the law by holding it to a higher standard of proof than traditional radiation.

"I don't think you'll find much of an argument that protons don't do what we say they do," he said. "You can argue whether it's important to spare healthy tissues."

Knizley acknowledged the disagreement with Blue Cross has taken a financial toll, but pushed back against reports in Bloomberg News and The New York Times that the center was in default. Lenders stipulate conditions for borrowers, like having a certain amount of cash on hand, that could put them in default if the borrower fails to observe them and the lender calls them on it, but no lenders have indicated a problem, he said. He declined to specify what conditions the center might have violated.

"We've not had any problem with cash flow," he said. "None of us have another job lined up."

Proton centers are expensive to build, Knizley said, and they've attracted fewer patients than anticipated. That raises the cost of caring for each individual patient, because the overhead is divided among fewer people, he said.

"Many proton centers did not meet the expectations of whoever built them, or the bankers," he said.

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