Cancer survivors and their loved ones who attend meetings of the Prostate Network in Kansas City have talked for years about a radiation treatment called proton beam therapy.
They know it’s expensive and controversial. Some doctors and healthcare experts say it’s no more effective than standard X-ray radiation, and costs twice as much. But some of the network’s own members have used proton therapy and swear by the results.
“My experience is highly favorable,” George Benner said at a recent meeting. He traveled to the Mayo Clinic in Rochester, Minn., three years ago for proton beam radiation and since then has needed no further treatment and experienced no side effects.
“I would recommend it,” said Benner, who had been diagnosed with intermediate-stage prostate cancer. “I’m no scientist, no doctor, certainly, but it seems to have the ability to focus more on the cancer without other issues arising.”
In Kansas City, the debate about proton beam therapy is about to extend far beyond the still-small contingent of cancer patients and medical providers who are familiar with it.
Two very different cancer care operators have announced plans to open proton treatment centers in the next couple of years. If those plans come to fruition, the region will almost certainly see aggressive marketing campaigns to sell a treatment that experts still aren’t sure is necessary in many cases and that insurers are often reluctant to cover.
Proton beam therapy pinpoints doses of radiation at tumors, reducing the chance of damage to surrounding tissues. The machines that accomplish this task are among the most expensive medical devices on the market. Treatments usually cost around $50,000.
Coming to Kansas City soon
The University of Kansas Hospital announced in July it was purchasing a $40 million proton therapy machine to use at its main cancer center on Rainbow Boulevard in Kansas City, Kansas. Two months later, a Tennessee-based company, Provision Healthcare, said it would locate two machines in a new $100 million cancer treatment center in Lenexa.
Steve Hentzen, chairman of the Prostate Network, thinks the arrival of proton therapy here is long overdue. He has watched patients leave home for months at a time to receive proton treatments in other cities. And, although data is sparse, it makes sense to him that the targeted radiation can spare patients from painful and distressing side effects such as urinary incontinence and rectal bleeding.
“I don’t care what this stuff costs,” Hentzen said. “I want my guys to get the best cures.”
John Leifer, a local health care consultant, said he “nearly caused an altercation” when he questioned the effectiveness of proton therapy while attending a meeting of the Prostate Network last year.
“I really looked at this issue hard when those guys yelled at me for not knowing what I was talking about,” he said. “Did I miss something, you know, some kind of pivotal research study? I talked to a number of people and they said, no, the evidence isn't there.”
For years, proton beam therapy was available in only two U.S. cities: Cambridge, Mass., and Loma Linda, Calif. Its use was reserved for fairly rare conditions such as eye cancers and certain cancers in children.
A beam boom
By 2009, the number of providers had tripled to six, as leading research hospitals and cancer centers began offering proton therapy. The last 10 years have seen a proton beam boom, as the machines have become less costly to manufacture and the healthcare industry spied a new market. Thirty-four centers are now in operation and more are in the works.
But even with lower startup costs, proton beam centers need to serve hundreds of patients each week just to break even.
“Hospitals that get into this are taking a gamble,” said Shannon Brownlee, a health care cost expert and senior vice president of the Lown Institute, a healthcare think tank in Brookline, Massachusetts. “Some proton beam machines are profitable. But when you get too many of them, eventually you run out of patients. What are you going to do — pick people up off the street and say you need proton beam radiation?
Providers haven’t resorted to that, but they have aggressively sought new markets. Proton therapy is now used to treat a variety of cancers, including brain, neck, esophageal and breast tumors. The largest, most lucrative, patient pool is the 175,000 or so men in the United States diagnosed annually with prostate cancer.
“We have contemplated the idea of getting a proton beam many times,” said Kenon Qamar, a radiation specialist who treats prostate cancer patients at Kansas City Urology Care.
But his practice has opted against it.
“There’s absolutely no science that says it's any better,” Qamar said. “There’s some science that says it’s more toxic and can have some irregular side effects that you don't see with X-ray radiation. Why would our group gouge society of several times the fees for a treatment that doesn’t cure any more prostate cancer patients and charges them a lot more money?”
The National Comprehensive Cancer Network, in its most recent guidelines, concluded there is no evidence to suggest that proton therapy is any better or worse than standard radiation therapy in the case of prostate cancer. The American Society for Radiation Oncology has said more research is needed, and recommended that insurers cover proton treatments for prostate cancer if the patient is enrolled in a study or registry.
A duty to investigate
The need for study and clinical trials is one of the justifications the University of Kansas Hospital offers for its investment in proton beams. As a research hospital with a National Cancer Institute designation, doctors there say they have a duty to further the science of cures for all forms of cancer.
Ronny Rotondo, who will serve as director of the University of Kansas Cancer Center’s proton therapy operation, said the data increasingly shows benefits from the treatment.
“If we look at things like pediatric brain tumors, we're seeing clinical data that shows we are not seeing the detriment in IQ that we've seen historically with conventional radiation,” he said.
The University of Kansas Health System released this video announcing its selection of IBA as a partner in its proton beam therapy venture:
Research from the Washington University School of Medicine in St. Louis and the University of Pennsylvania in Philadelphia, published this week in the journal JAMA Oncology, found that patients who undergo proton therapy are two-thirds less likely to experience side effects severe enough to require hospitalization than patients who receive traditional X-ray radiation. Researchers found that the cure rates of the two groups were nearly identical.
The study group included patients with brain cancer, head and neck cancer, lung cancer, gastrointestinal cancer, and gynecologic cancer. Researchers called for further trials to validate their results.
Shane Stecklein, a radiation oncologist with KU’s Cancer Center, noted that it took decades of research and combined studies to show that the use of standard X-ray radiation improves survival rates for early stage breast cancer patients.
“So the fact that the data don’t exist at this point doesn’t mean this treatment isn’t warranted or cannot benefit patients,” he said. “It’s just that in diseases like breast cancer and prostate cancer, it can take thousands of patients and decades of experience to show a benefit.”
The limited availability of proton beam machines and the refusal of many insurance companies to cover treatments has prevented researchers from amassing broad data, Stecklein added.
Doctors said KU Hospital’s new proton radiation center will be constructed near the existing standard radiation center. Oncologists will evaluate work with patients to develop the best treatment plan.
“We are not building a standalone proton facility,” Rotondo said. “We are building a proton facility which will be integrated into an academic, full-service, comprehensive radiation oncology department.”
That’s in contrast to KU’s potential competitor, Provision Healthcare, whose primary service is proton beam therapy. The company’s stated mission is “making proton therapy a clinical reality.”
Provision operates proton therapy centers in Knoxville and Nashville, and has another under construction in Orlando, Fla. It also operates a subsidiary company, ProNova Solutions, which manufactures proton beam machines.
“We like to say that we are the only cancer care provider in the world that is vertically integrated,” said Terry Douglass, Provision’s executive chairman. “We don't only have a cancer center, we also have the systems that make the cancer center work.”
Provision plans to use public tax-exempt bonds to finance its $100 million center in Lenexa, Douglass said. He is confident that the investors who bought into Provision’s other centers will also want a share of the Kansas project. Douglass himself loaned his company’s Knoxville center $42 million.
But Provision’s reach into the Kansas City area comes at a time when many proton therapy centers are struggling financially. Analyses of the industry have revealed that close to a third of the centers, including Provision’s Knoxville facility, have experienced struggles in meeting financial projections.
In an interview with KCUR, Douglass shrugged off concerns about the centers’ financial viability. An independent market analysis has shown that the Kansas City region will eventually need eight proton therapy rooms, he said.
Douglass said he expects half of Provision’s Kansas City patients will use Medicare, which has been more willing to reimburse patients for proton treatments than private insurers.
Provision hired seven lobbyists during an unsuccessful effort in 2014 to persuade the Tennessee legislature to mandate that private insurers cover most proton therapy treatments. This year, Tennessee Gov. Bill Lee signed a bill requiring the state’s insurance plan to cover proton therapy for state employees.
Douglass said Provision’s research has shown that private insurers in the Kansas City market are open to reimbursing patients for proton therapy. His company will assess the local insurance climate further once its Lenexa project breaks ground, he said, adding that he did not rule out seeking legislative action.
Patients undergoing proton therapy generally receive five treatments a week for four to eight weeks. Provision was drawn to the Lenexa location because it is close to housing and other amenities for out-of-town patients, Douglass said.
The company will need to treat at least 70 patients a day, he said. Provision has signed a professional services agreement with TRI, a group of about 15 radiation oncologists in Kansas City, and is looking for additional partners.
Jennifer Maggiore, executive director of the National Association for Proton Therapy, said the plans for two centers was great news for patients. People who live in and near Kansas City will no longer have to disrupt their lives to travel elsewhere to be treated, she said.
“I think that we need to not look at cancer as a competition and make sure that cancer care works on being the most beneficial for the patients in your community,” she said. “I think it's exciting for Kansas City, that you'll be able to have access to this for those patients.”
But Brownlee, author of “Overtreated: Why Too Much Medicine is Making Us Sicker and Poorer,” said competition is inevitable.
In the Washington, D.C., region, public buses carry advertisements for multiple proton beam facilities, she said.
“Once a hospital has invested $100 million into a piece of technology and all the surrounding stuff that goes with it, that hospital is darn well going to try to find a way to recoup that investment,” Brownlee said. “And that means it needs to run patients through that machine. So it’s going to advertise the machine. It's going to encourage physicians to recommend it.”
Qamar, of Kansas City Urology Care, said providers use proton beam therapy as a “shining bell” to draw patients.
“A lot of people get protons because they believe there’s a so-called halo effect,” Qamar said. “They can tell the public, ‘Hey, look how great we are. We have this big fancy expensive machine that nobody else has.’”
Some patients will conclude they don’t need proton therapy, Qamar said. “But they're already plugged into the institution now. And so they'll stay there and get whatever treatment it is they do need.”
Brownlee agreed that patients often are drawn toward expensive treatments.
“This is a fundamental problem with American healthcare,” she said. “This belief that if it makes money, it must be a good thing. That’s not always the case.”
Hentzen, who co-founded the Prostate Network seven years ago, said the experiences and needs of patients are more important to him than a wonky debate over cost and effectiveness.
“You guys aren’t just numbers. You guys are my friends,” he told the group. “To think that you and anyone who comes after you is getting something better as a treatment, I just think that’s fantastic. I think for Kansas City this is a win, every which way you look at it.”
Correction: An earlier version of this article misspelled Ronny Rotondo's name and should have attributed a quote to him that was attributed to another doctor.
Barbara Shelly is a freelance contributor for KCUR 89.3. You can reach her at firstname.lastname@example.org.
Dan Margolies is a senior reporter and editor at KCUR. You can reach him on Twitter @DanMargolies.