Kate Weissman was 30 when doctors found the tumor. She was treated with radiation and chemotherapy, but within months, her cervical cancer had spread.
Still, doctors were confident that Weissman could heal and live a long, healthy life if she received a potentially promising but very costly form of radiation treatment: a beam of protons designed to precisely target her tumor while protecting the vital organs nearby.
Weissman’s health insurer didn’t agree. Three years ago, as she began preparing for the treatment at Massachusetts General Hospital she thought would save her life, UnitedHealthcare refused to cover the $95,000 bill. The insurer said the treatment, known as proton beam therapy, was experimental and not proven to be more effective than conventional radiation for Weissman’s disease.
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Weissman and her doctors appealed, but were turned down repeatedly — a pattern she later learned is common for patients seeking proton therapy. Now Weissman is suing UnitedHealthcare for wrongfully denying coverage for her treatment. The March lawsuit, filed in federal court in Boston, seeks class-action status.
“Unfortunately, the insurance company knew it would cost more, and they put the bottom line above me as a patient,” said Weissman, now 33, who lives in Charlestown with her husband.
The lawsuit puts a spotlight on a highly controversial medical treatment, and whether its possible benefits justify its massive cost. Proton therapy typically costs at least twice as much as standard radiation. Weissman’s parents ultimately pulled money from their retirement savings to pay for her treatment.
The proton therapy industry markets the treatment, and many oncologists recommend it. But insurers and health care experts are skeptical. They note that the scientific evidence is weak or lacking: For most cancer patients, research has failed to show that proton beam treatment offers benefits over standard radiation.
Standard radiation, prescribed for many kinds of cancer, uses X-rays, which can cause damage to the healthy tissue surrounding a tumor as they enter and exit the body. Proton radiation is designed to more precisely target tumors and better protect the surrounding healthy tissue.
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Proton treatment requires bulky and complex equipment, weighing many tons. The machine, usually a cyclotron, accelerates the protons. Electromagnets guide the protons into gantries, which rotate and direct the invisible beam to a patient’s tumor. Patients typically receive several rounds of treatment over many days or weeks.
This technology is enormously expensive — the cost of opening a new proton treatment center can easily exceed $100 million — and those costs are passed on to patients and insurers.
Mass. General opened one of the first proton treatment centers in the country, in 2001, and now treats 600 to 800 patients a year. It remains the only proton center in New England. There are about 30 centers nationwide, funded by nonprofit hospitals as well as private investors. Many were built over the past five years, and still others are in development.
Proton therapy is often used to treat children with brain tumors and for adults with tumors near sensitive areas, such as the eyes. For many other cancers, health insurers routinely deny coverage. Half to well over half of patients are initially denied coverage for proton therapy, according to estimates by doctors and groups that promote the treatment. Some of those patients get covered after they appeal.
But insurance denials may be appropriate, according to experts who have reviewed the research on proton therapy. They say that numerous scientific studies have failed to demonstrate that proton therapy is better than standard radiation for most patients.
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Two analyses, done in 2012 and 2014, found evidence of benefits for ocular, brain, and spinal tumors, and for pediatric cancers. But for other cancers, proton therapy was not shown to be superior to standard radiation — or there wasn’t enough evidence to determine a health benefit, researchers said.
The 2014 report from the Institute for Clinical and Economic Review, a Boston-based research center, said that for “common cancers such as breast and prostate, the poor evidence base and residual uncertainty around the effects of PBT is highly problematic.”
Harvard health economist Amitabh Chandra calls proton therapy centers big and useless “Death Stars,” and a prime example of waste in the high-cost US health care system.
“It’s controversial because it’s incredibly expensive, and there isn’t any evidence that it actually works for many of the ways it’s being used,” said Shannon Brownlee, senior vice president at the Lown Institute, a Brookline-based health care think tank.
“It’s being hyped by the hospitals, and the hospitals have a very clear financial reason to hype the treatment. It cost them $100 million to build this machine, and they better pay for that.”
Even doctors who recommend proton therapy for their patients acknowledge that more research is needed to understand its effects, and additional studies are underway.
UnitedHealthcare, the country’s largest private health insurer, has yet to file a response to Weissman’s complaint and declined to comment directly on the lawsuit.
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“UnitedHealthcare bases its medical policies and coverage decisions — including for proton beam therapy — on the prevailing published clinical and scientific evidence,” spokeswoman Maria Gordon Shydlo said in an e-mail.
Weissman, a public relations professional in Boston, learned she had cervical cancer in October 2015. The cancer later spread to two nearby lymph nodes. Doctors at Dana-Farber Cancer Institute referred her to Mass. General for proton therapy; they believed it would attack the tumor while minimizing damage to her bowels and kidneys, Weissman said.
The first denial of insurance coverage came as a surprise: Weissman was at the hospital already prepping for proton treatment. Over the next few weeks, Weissman said, she and her doctors appealed the insurer’s decision six times. She and her husband spent countless hours on the phone trying to sway the company. But every time, the answer was no.
“I remember literally being in the chemo chair one day on the phone with UnitedHealthcare, fighting them to overturn the rejection, and they wouldn’t,” she said.
Eventually, her parents, who live in Philadelphia, called with a question: How much would the treatment cost? In May 2016, they wired $95,000 to Mass. General, and Weissman began proton therapy a few days later.
She teared up as she recalled her parents’ sacrifice. “I was grateful and devastated at the same time,” she said.
Weissman said hospital officials later refunded her parents $40,000, without providing an explanation.
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Dr. Jay Loeffler, chief of radiation oncology at Mass. General, said insurers have become more strict about approving proton therapy in recent years, as the costs of treatment have climbed.
Loeffler said he is on the phone with insurers several times a week, arguing the case for patients who have been denied coverage. “It’s horrible,” he said. “We’re losing the battle of getting patients on treatment.”
Mass. General doctors recommend proton therapy for a subset of cancer patients, those for whom research shows the greatest potential benefit, Loeffler said: “We are guided by data, experience, and investigation.”
Among private health insurers, Blue Cross Blue Shield of Massachusetts appears to have one of the more generous policies for proton therapy. Company officials said they make coverage decisions after consulting with radiation oncologists and pay for proton treatment when it is likely to help protect the healthy tissue surrounding a tumor.
Harvard Pilgrim Health Care and Tufts Health Plan each said they cover proton therapy for certain cancers, but they consider the treatment experimental and do not cover it for a long list of other cancers, including pelvic tumors like Weissman’s.
Despite the resistance by insurance companies, proton therapy is growing. Mass. General is in the final stages of a $30 million expansion of its proton treatment center. Three New York health systems are teaming up to open a new treatment center in Manhattan in June.
Nearly 11,000 Americans received proton treatment in 2017, a 19 percent increase from the previous year, according to the National Association for Proton Therapy, a group funded by treatment centers.
Relatively few patients can afford to pay for the treatment themselves. Many denied coverage for proton therapy often end up receiving standard radiation, even if they and their doctors may be concerned about side effects.
Proton treatment has been the subject of other lawsuits. Last fall, a jury in Oklahoma awarded $25.6 million to the husband of a woman who alleged that Aetna improperly denied coverage for her treatment. The patient, who died in 2015, paid more than $92,000 for proton therapy at MD Anderson Cancer Center in Houston, according to the suit.
UnitedHealthcare is also facing another class-action complaint in Florida, which was filed in April, for denying coverage of proton therapy for prostate cancer.
Weissman has been cancer-free for almost three years. Her brown hair, which she lost during chemotherapy treatment, has grown well past her shoulders. She is working full time again, and she has regained the energy to exercise and play with her dog.
“I realized how many other patients must have gone through what I went through, and how many other people didn’t have the resources that I did to be able to pay for my treatment,” Weissman said. “I felt a calling to make this my mission.”
Priyanka Dayal McCluskey can be reached at priyanka
.mccluskey@globe.com. Follow her on Twitter @priyanka
_dayal.