Penn Medicine is going all in on proton therapy, a costly treatment that is unproven for most common cancers

Under a white party tent in the Virtua Voorhees Hospital parking lot, waitstaff served coconut-crusted shrimp and sushi rolls on silver trays. A three-piece jazz band played as an invitation-only crowd was treated to three open bars and gift boxes of chocolate truffles, stacked in tiers like a wedding cake.

The gala previewed a new $45 million facility built to hold a 90-ton cylindrical machine that harnesses high-energy protons to zap cancer cells with pencil-point precision.

South Jersey gained its first proton therapy center through a joint venture between the hospital and Penn Medicine, whose medical and business muscle is helping to transform the region into a premier testing ground for a costly treatment that is still being studied to see if it’s better than cheaper, standard radiation to fight most cancers.

The Philadelphia region is emerging as a hot spot for proton therapy, sitting at the heart of the nation’s highest concentration of centers clustered between New York and Washington, D.C.

The Voorhees facility, slated to open by spring, gives the Philadelphia area its second proton center. A Penn competitor now proposes to open a third in the city, though the plan is in early stages. Penn, meanwhile, has extended its proton reach to Lancaster, where it opened a $48 million proton center in December.

Penn is already a global leader in this therapy. Through lucrative financial agreements with international manufacturers of proton technology, Penn says it has trained more than 70% of doctors now using proton therapy around the world.

These partnerships made Penn a leading recipient of industry money among hospitals nationwide, government records show.

Penn is also a driving force in the scientific investigation that could ultimately settle an ongoing debate about whether proton therapy actually yields higher cure rates, greater longevity, or fewer harmful side effects. It is leading a closely watched research trial, largely funded by the federal government, comparing proton and traditional radiation therapy for breast cancer. It’s involved in another for prostate cancer.

Penn’s current expansion reflects a rationale — which research has yet to prove — that proton radiation is less toxic to the body, with fewer severe side effects, reducing the chances of secondary cancers as patients age.

“That’s going to take decades to prove. Do we want to wait for that? No,” said James Metz, who chairs Penn’s radiation oncology department. “Our job at Penn is to push the future.”

» READ MORE: What to know about proton therapy, the costly and controversial cancer radiation treatment

Proton radiation works by delivering a beam of proton particles that stops at the tumor, so it’s less likely to damage nearby healthy tissue. Conventional radiation beams X-rays to the tumor and beyond, exposing nearby tissue and organs to radiation. Still, the latest X-ray technology is considered highly sophisticated and often half the price of proton therapy.

Penn radiation oncologist Justin E. Bekelman put the difference simply: “Both of these treatments are terrific. The question is, is one better than the other and for whom? But it’s sort of like, one is a Mercedes-Benz and one is a BMW.”

Some evidence shows advantages for proton therapy against rarer, hard-to-treat tumors in sensitive areas, such as the brain, spinal cord, and eye, but the verdict remains out for more common diseases such as breast or prostate cancer.

» READ MORE: For breast cancer patients, Penn researchers are comparing costly proton therapy with standard radiation

Critics call the proliferation of proton therapy centers the poster child for profiteering in the American health care system, where the newest, shiniest technology drives up costs for everyone.

Who pays seems as complicated as the technology itself. Taxpayers are supporting the proliferation of proton therapy, which is widely covered for seniors relying on Medicare for health insurance. But private insurers won’t cover proton radiation for the vast majority of adult cancer patients, citing unproven benefits and exorbitant costs. They will cover protons for pediatric cancers because there’s a medical consensus that it’s less harmful to children’s developing tissues.

If clinical trials ultimately show that protons lead to patients living longer with fewer side effects, insurers may be compelled to pay.

“The technology marches on, but the data isn’t yet in,” said Anthony Zietman, interim chief of the Department of Radiation Oncology at Massachusetts General Hospital and Harvard Medical School. “Penn is making a bet, and they may be right.”

Caught between doctors and insurers are patients like Zachary Rizzuto, who was 37 years old when an MRI found a grapefruit-sized tumor in his lower, right brain.

After two surgeries and chemotherapy at Penn, Rizzuto’s physician recommended proton radiation treatment. But Rizzuto’s health insurance company denied coverage, concluding it was “experimental” and “not more effective” than cheaper, standard radiation.

Rizzuto and his wife, Melissa, turned to GoFundMe to raise $125,554 for 33 proton treatment sessions at Penn. Penn required half of the money in cash up front.

The couple, while furious with their insurer, had complete faith in Penn’s medical expertise.

“In my mind, UPenn was always the God of medicine,” Melissa Rizzuto said.

When Penn opened the Roberts Proton Therapy Center in University City in 2010, the $144 million Philadelphia center was the first in the Mid-Atlantic — the only one between Boston and Florida — and one of just six such centers nationwide.

Today, there are 41 proton therapy centers across the country, according to the National Association for Proton Therapy, a Virginia-based nonprofit founded in 1990 to promote the treatment. Penn hails its Roberts Center as “the largest in the world,” with five treatment rooms that it says serve about 900 patients a year.

The industry group’s tracking shows two proton centers currently serving the entire state of California. Meanwhile, the Philadelphia area is on its way to having three. Penn competitor Jefferson Health is planning to build a center in North Philadelphia. Neither Jefferson’s planned one nor the Voorhees center is counted among the 41 active centers.

In the stretch between Boston and Florida, where Penn once stood alone, there are now 10 other centers up and running.

The explosive growth worries Vikas Saini, a cardiologist and president of the Lown Institute, a think tank that examines quality, cost, and equity across health care. He said doctors are prescribing proton therapy in a gray area — they think it may be better for a patient than the cheaper alternative, but there’s no hard proof.

“Everybody knows the game: You get an approval, and you go out on the market, then you expand the indications,” Saini said. “It’s called indication creep, or scope creep.”

The majority of patients receiving proton beam therapy in the U.S. in 2018 were treated for cancers for which the therapy is not considered medically necessary by the American Society for Radiation Oncology, according to a study in the Journal of the American Medical Association (JAMA).

The 2022 study found that most of the therapy for the cancers for which evidence is sparse was paid for by Medicare, the government’s health insurance program for seniors and people with disabilities.

Medicare generally covers proton therapy — at double the cost to taxpayers.

In 2022, Medicare paid about $1,300 for each proton session, compared with less than $600 for each conventional radiation treatment. Slightly more than 40% of patients treated with protons at Penn are Medicare beneficiaries. Pennsylvania Medicaid, the government’s insurance program for people with limited income, offers limited coverage for proton therapy, typically evaluated only on a case-by-case basis, according to Penn.

For prostate cancer, one of the most common cancers in men, many private insurers pulled back on coverage for proton therapy after studies, including one with Penn, showed little difference in outcomes. Some centers lost money, defaulted on loans, or went bankrupt.

Penn’s approach is different, its leaders say. For starters, Penn’s two new facilities are smaller and less expensive than the Roberts Center, which Penn says is profitable. Each has one treatment room, projected to treat roughly 180 patients a year.

Its internal projections show that there are more than enough cancer patients to treat with protons, said Penn’s Metz, a leading expert in the field.

Penn also does not rely on a private equity partner or lending banks, which insulates it from pressure to drive up patient numbers to turn a profit, according to Metz.

“It allowed us as physicians to really explore what’s the best treatment,” he said.

Proton therapy centers also are good for marketing, he said.

“Many patients come in looking for protons, but many times other treatments are right for them,” Metz said. “It actually grows the overall volume.”

During the VIP preview in Voorhees back in October, the crowd of about 150 turned toward the new building for a lighting ceremony as darkness fell. They counted backward from 10 and then strobes of red, blue, and white illuminated the facade, acting like a giant billboard.

“By shining our light, we’re letting our neighborhoods know that we are here,” said Dennis Pullin, Virtua president and CEO.

The hospital promised that the first 100 patients through the door would receive an ornamental glass suncatcher as a “symbol of healing and hope.”

Penn promotes its centers with descriptions like “state-of-the-art,” “lifesaving,” and “leading-edge form of cancer treatment.”

Penn’s websites say the treatment can offer “fewer, milder side effects” and is “best” for breast and prostate cancers, among others.

The web pages don’t acknowledge that it is still running studies to prove those assertions.

“They are making some very strong claims based on very weak evidence,” said Steven Woloshin, professor at the Dartmouth Institute for Health Policy and Clinical Practice. “That’s a real red flag.”

Even as the scientific verdict remains out, Penn made more money than any other hospital in the U.S. from a leading manufacturer of proton technology, public filings show.

Varian Medical Systems gave Penn about $7.2 million between 2015 and 2021, according to an Inquirer review of data from the Centers for Medicare and Medicaid Services.

Much of this money paid for Penn to train other providers worldwide, Metz said. Roughly $2 million went to research.

When Varian sells a new proton center, the buyer can pay extra to have Penn doctors train their staff — at their site or in Philadelphia.

Penn has a similar training agreement with another top manufacturer, Ion Beam Applications, or IBA, Metz said.

“We actually train about 70 percent of the people in the world doing protons,” said Metz, who also has been a member of advisory boards for both Varian and IBA.

To get treated at Penn, the Rizzuto family had to turn to GoFundMe in 2018 to pay for a therapy that their insurance refused to cover, citing a lack of evidence.

Zachary and Melissa Rizzuto were expecting their first child when Zachary began acting strangely.

The self-described neatnik would pour milk into a cereal bowl — and keep pouring. He stood frozen as milk spilled over the kitchen counter. He dismissed it as work stress. But as he continued to experience minor blackouts, his wife made him see a doctor.

An MRI showed a brain tumor. Their daughter, Roxanne, was only 3 months old when a biopsy confirmed it was a rare and aggressive tumor: anaplastic astrocytoma.

“I just broke down. It was completely devastating,” Zachary Rizzuto recalled recently. “You hear brain tumor, and in my mind, I’m thinking, ‘I don’t know how long I’m going to live.’”

The couple live in Florida but sought treatment at Penn, based on its reputation for excellence and proximity to Melissa Rizzuto’s parents, who live about 20 minutes outside Philadelphia and helped care for Roxanne.

“Would he have survived with the other treatment? Yes. Would he be able to work, possibly speak, and function? Maybe not.”

After two surgeries to remove the tumor, Zachary Rizzuto still had cancer cells in portions of his brain crucial to vision and memory. Their radiation oncologist at Penn prescribed proton therapy, assuring the couple that the beam’s precision would spare healthy brain tissue.

Rizzuto would need more than 30 sessions at $3,805 each.

The couple had already flown into Philadelphia from their Fort Myers home in February 2018 to start treatment when they learned that their health insurance company, UnitedHealthcare, had denied coverage.

Penn required they pay half of the total cost up-front — $66,777 — to begin treatment. The couple turned to family, friends, and strangers to help them raise the money while appealing to UnitedHealthcare.

“Zachary is a 37-year-old man in peak health other than his tumor,” Melissa Rizzuto wrote in a letter to UnitedHealthcare. “He has a 9-month-old daughter and needs to maintain an appropriate quality of life and cognitive function in order to earn a living and care for his family.”

Penn doctors also wrote appeals. “Proton therapy treatment for brain tumors targets tumor cells while significantly reducing the damage of healthy tissue surrounding the brain,” wrote Rizzuto’s doctor, Robert Lustig, who has since retired. UnitedHealthcare denied the appeals.

In an emailed statement to an Inquirer reporter, UnitedHealthcare spokesperson Maria Gordon Shydlo wrote that they rely on “evidence-based protocols to make these coverage decisions.”

“We are committed to providing our members coverage for safe, proven and clinically effective health care services,” she wrote.

Zachary Rizzuto is suing UnitedHealthcare for wrongful denial of coverage. His attorney contends that current coverage policies are arbitrary, pointing out that UnitedHealthcare covers proton therapy for children younger than 19. The insurer also sells plans for Medicare Advantage, which covers proton treatment for seniors, 65 and up.

Zietman, who specializes in cancer treatment at Massachusetts General Hospital, said it will take many clinical studies with “thousands of patients” to determine if protons are truly advantageous over traditional (X-ray) radiation. Both treatments, he said, have technologically advanced within the past three decades.

“It’s not even certain that protons are better. It might even be worse,” Zietman said. “I think generally speaking for brains, it’s a very good treatment. But, there are some parts of the brain for which it may not be.”

Rizzuto has a tumor type that is expected to grow back someday, but for now, doctors consider it to be stable. There’s a small piece of tumor surgeons couldn’t remove, but brain scans so far show it hasn’t grown.

He’s back working full time as a digital marketing manager. The couple’s daughter, an infant when Rizzuto was diagnosed, turned 5 years old this past May.

Melissa Rizzuto said she’s convinced her husband benefited from proton radiation. “Would he have survived with the other treatment? Yes,” she said. “Would he be able to work, possibly speak, and function? Maybe not.”