When Kim Fuller found love and a new home in rural East Tennessee, she was harboring a frightening secret.
She had discovered a lump in her right breast. She told no one—not even her daughters. Read More
When Kim Fuller found love and a new home in rural East Tennessee, she was harboring a frightening secret.
She had discovered a lump in her right breast. She told no one—not even her daughters. Read More
Three bills aimed at helping patients get better insurance coverage for proton therapy are making the rounds of committees in Nashville this week, and Provision is urging patients and their friends and families to get involved.
For too many, trying to obtain the best treatment has brought them to blows with their insurance companies.
That was the case for Alexa Gash, who at 29 was diagnosed with throat cancer. Her father had recently suffered from the same diagnosis, and on the advice of the family’s physician, the couple began researching proton therapy. Because of Alexa’s age, they wanted to find a treatment that would be most effective but also spare her from unwanted long-term side effects. With conventional radiation, she risked permanent damage to her salivary glands, taste buds and teeth as well as the potential need for a feeding tube during and post-treatment due to a painful condition called mucositis caused by the excess radiation dose delivered outside of the tumor.
But, although Gash was determined a good candidate for proton therapy, her insurance company, BlueCross BlueShield of Tennessee, disagreed and denied her request for coverage. The company designated her treatment “experimental” and denied appeals to reconsider her case based on the potential ramifications of conventional radiation therapy.
Even though Medicare has covered proton therapy for more than 20 years and the National Comprehensive Cancer Network guidelines support proton therapy in the treatment of head and neck cancer, BlueCross simply said “No.”
In recognition of the gap in coverage and the beneficial impact that proton therapy can have for cancer patients, several legislators have introduced several bills in the Tennessee General Assembly that would require insurance companies to cover proton therapy under specified conditions at no additional cost to the insurance companies. They include:
• House Bill 0883 (Rep. John Holsclaw) & Senate Bill 0210 (Sen. Dr. Mark Green): Requires the state group health insurance program to cover hypofractionated proton therapy for treating cancer under certain conditions.
• House Bill 0523 (Rep. Bob Ramsey) & Senate Bill 0367 (Sen. Doug Overbey): Requires health insurance coverage to cover hypofractionated proton therapy in the same manner as it covers intensity modulated radiation therapy under certain conditions.
• House Bill 0899 (Rep. Mark Pody) & Senate Bill 0758 (Sen. Mae Beavers): Prohibits certain health benefit plans that provide coverage for cancer therapy from holding proton radiation therapy to a higher standard of clinical evidence for medical policy benefit coverage decisions than the health plan requires for coverage of any other radiation therapy treatment.
Currently, the insurance company lobby is fighting the legislation in spite of this increased support for proton therapy in both research and legislative circles, as well as the growing development of proton therapy centers around the world. Instead, they wear out their own insureds with an endless appeal process forcing frustrated patients, their families and healthcare providers to seek redress in the courts or the legislature.
Over the coming days and weeks, the bills will be heard in the Joint Pensions and Insurance Committee chaired by Chattanooga’s Sen. Bo Watson, the Senate Finance and Labor Committee chaired by Franklin’s Sen. Jack Johnson and the House Insurance and Banking Subcommittee chaired by Rep. Kelly Keisling from Pickett County, Tennessee. Sen. Johnson has previously spoken out in favor of proton therapy in publicly supporting the development of Tennessee’s third proton center in his district.
Find out more about how to contact your legislator and help promote these proton therapy bills.
When Ken Rainey decided he wanted to pursue proton therapy in lieu of conventional radiation for his throat cancer, he thought navigating his VA insurance would be tricky.
As it turned out, Rainey benefited from a program called Veterans Choice, which allows veterans who have significant wait times for treatment or live at some distance from appropriate treatment facilities to received care at a non-VA site of their choosing. Read More
Insurance companies may not consider proton therapy a “medical necessity,” but a growing body of medical evidence and doctors opinions disagrees.
In a cover column featured in The American Journal of Managed Care, Dr. Steven Frank, medical director of the MD Anderson Proton Therapy Center, makes the case that it’s past time for insurance companies to include protons as an accepted, and covered, treatment for a variety of cancers.
Citing the many patients who are denied proton therapy by companies who deem it not “medically necessary” and “experimental”—or simply dismiss the claim without explanation—Frank argues that the term, “medical necessity” should be standardized rather than left to the subjective whims of business-oriented institutions.
“Why should insurance companies—whose financial incentives direct them toward cost savings—be dictating what is medically necessary for cancer treatment?” he writes. “Physicians have experienced inconsistency in the labeling of ‘medically necessary procedures for years. … In a study recently published in the International Journal of Particle Therapy, we found that insurance coverage of proton beam therapy in the State of Texas varied not only among payers, but also for the type of cancer.
“Even more concerning, a previous decision to cover proton therapy for prostate cancer was reversed and proton therapy was determined to be “not medically necessary” after the removal of key published references from the payer’s updated medical policy.”
Research is also showing that proton therapy can actually result in decreased overall medical costs for cancer patients, Frank writes.
“The episodic cost of care can be reduced when proton therapy decreases the amount of radiation to parts of the body that are not affected by the cancer by eliminating or reducing the severity of treatment-induced acute and long-term side effects and by reducing the risk of secondary cancers.
“One such study showed that hospital stays were longer for patients with esophageal cancer treated with older techniques (mean length of stay 13.2 days after conventional 3-dimensional radiation therapy, 11.6 days for intensity-modulated radiation therapy, and 9.3 days for proton therapy). Using advanced radiation therapy technologies like proton therapy can reduce postoperative complications and shorten hospital stays, which reduces healthcare costs.”
There are steps being taken toward broader insurance coverage for proton therapy. University of Texas System’s employees are participating in a one-year pilot program with Blue Cross Blue Shield of Texas (HCSC) and MD Anderson allowing proton therapy coverage for cancers of the head & neck, esophagus, breast, and lung as well as patients participating in proton therapy clinical trials. Information will be collected and shared about proton therapy and its costs, which will help to make the case that broader coverage should be extended to other states and healthcare systems.
“We need insurers across the country to think innovatively and provide leadership similar to Blue Cross Blue Shield of Texas by partnering with employers and providers to find ways to provide broader coverage for patients that will benefit from proton therapy, “ says Scott Warwick, Chairman of the National Association for Proton Therapy.
Proton therapy has been proven an effective and, in many cases, cost effective treatment option. It’s time for all of those involved in providing patient care acknowledge that reality, Frank concludes.
“Cancer touches thousands of lives each year in a truly indiscriminate way. However, we should not be arbitrary in the way we combat the disease and define medical necessity. If we wish to defeat cancer once and for all, all parties—both doctors and insurers—must finally unite in support of best practices such as proton therapy. Let’s start now and be advocates for all patients with cancer.”
CLICK HERE to watch the segment.
Nearly five years ago, 32-year-old Lindsay Rumberger was diagnosed with epithelioid hemangioendothelioma, a long name for a rare cancer that had originated in her liver and metastasized to her lungs. She underwent chemotherapy, but when a tumor close to her spine showed signs of growth, radiation was part of the recommended course. Because conventional radiation treatment threatened to cause peripheral damage to this most sensitive part of the body, her doctors recommended proton therapy instead. However, the insurance provider disagreed, calling the treatment “experimental” and refused coverage. Read More
When Jacques René Sirois was diagnosed with prostate cancer back in 2014, he knew what he wanted, and he didn’t mind waiting for it.
“I’m not a surgery type of person,” says Sirois, of Franklin, Tenn. For good reason. His brother, diagnosed at 56 with prostate cancer, had undergone a prostatectomy.
“He had surgery—I remember the pain he went through. He’s still suffering the effects at 64,” he says. “Another gentleman I know had radiation. He’s a total mess now.”
Then he met someone who had received proton therapy at the U.S.’s first treatment center in Loma Linda, Calif., and Sirois began looking into the option.
At his doctor’s office, the nurse practitioner offered a range of treatment alternatives, but proton therapy wasn’t on the list. His doctor mentioned it dismissively, because there is no treatment center there.
“After the consult I said, ‘I know what it’s going to be,’” Sirois says.
His insurance, Cigna, disagreed, denying coverage for proton therapy. He was 64. So Sirois decided to wait for Medicare, taking hormone therapy in hopes of keeping the cancer at bay until then. The plan worked. His PSA level went down, and he was able to wait until insurance kicked in, and he could travel to Knoxville.
But he didn’t wait to spread the good word about proton therapy. Sirois says two patients have come to Provision for cancer treatment on his recommendation, while another sought proton therapy treatment at a different center. And when he finally was able do the treatment himself, all lived up to his expectations.
He traveled from Franklin, a town just outside of Nashville, each week alone for treatment. But at Provision, he says, gesturing toward the lobby, “you’re not going to sit here by yourself.” He’s found the same level of hospitality among the Provision staff, which has made the stretches he’s away from home a little easier, he says.
“I am just amazed at the bedside manners,” Sirois says. “It’s from the minute I walk in to the minute I walk out.”
His friends at home didn’t forget him, though. They sent a Teddy bear, dubbed “Illie Willie,” along to keep him company. Each treatment Sirois hangs onto Illie instead instead of the rubber ring patients typically clutch while the protons do their work. During the day he hangs out with another bear brought by Sharon Hall, Provision hospitality coordinator.
“There have been nothing but positive things coming here,” he says.
It was a promising year for legislation that would nudge insurance companies toward coverage of proton therapy for cancer patients.
However, after two bills promoting commercial payment for proton therapy were tabled in Tennessee House of Representatives committees, it’s the third year such bills have met with the same result. In both cases the House committees failed to take up a vote on the measures, leaving them to essentially die on the vine—at least for this legislative year.
While the measures didn’t pass, there were some positives takeaways. The bills were proposed by legislators themselves and had grassroots support. This showed that local awareness of proton therapy is growing and that our legislators are increasingly viewing it as an important cancer treatment option.
We encourage patients and their families to connect with their legislators, whatever the state, to promote the importance of proton therapy and encourage insurance coverage. A bill promoting the use of proton therapy passed in the Oklahoma state legislature last year and this year a proton therapy measure was proposed in Virginia, in addition to the two in Tennessee.
But legislation is not the only tactic for combatting the problem of insurance coverage.
Provision will work to increase public awareness of insurance companies’ failure to widely cover proton therapy for cancer patients—resulting in some patients seeking alternative treatments with undesirable side effects or scrambling to pay the costs out of their own pockets, according to Scott Warwick, vice president of program development and strategic initiatives for Provision Center for Proton Therapy
“We believe when the public realizes that insurance companies are preventing patients from getting the medical care they need, they will help put direct pressure on insurance companies to pay for proton therapy,” he says.
Another strategy is for companies that are self-insured is to request providers add proton therapy coverage to their policies. Provision, for example, covers its own employees for proton therapy through Cigna. Seventy percent of people covered for health care under commercial insurance are included in these company-funded plans, affording the opportunity for proton therapy to be included in the policy at little extra cost.
At the same time, he says, Provision will continue, as it has for the past several years, to dialogue with insurance companies in an effort to “come to agreement on reasonable coverage terms for proton therapy.”
Thanks to all the patients who contacted our legislators this year to urge passage of the bills. With a consolidated effort by continued patient support your voice will be heard. Please voice your opinion to legislators and your insurance companies in support of proton therapy, a life-changing cancer treatment.
With the cost of cancer treatment making constant headlines and hundreds of million of dollars being invested into new proton therapy centers around the world, it’s tempting to believe some experts who tout the cancer treatment as the latest contributor to healthcare’s skyrocketing costs.
“People look at the cost of some proton therapy centers being built and assume because it’s so much more expensive to set up than conventional radiation that it is directly reflected in the cost to the patient,” he says. “That’s not exactly the way it works.”
The majority of proton therapy centers are freestanding rather than connected to medical centers. Medicare sets the rate it will pay for the service including the facility, equipment, personnel costs, supplies, geographic location, insurance and other direct and indirect expenses. It is not based solely on the price tag of the center and equipment. Private insurance companies individually negotiate with providers like Provision based on the rates Medicare sets for that facility.
Additionally, many of the centers receive significant philanthropic gifts to support the construction of the facility and purchase of the equipment. The Mayo Clinic, for example, received more than $100 million to support its new proton facility. This substantially reduces the cost to develop a proton therapy center.
And while initially proton therapy was more expensive than the conventional radiation it competed with, newer methods of delivering the therapy have reduced the number of treatments required and, thus, the cost of service.
Hypfractionation refers to the method of treating patients with the same prescribed dose of radiation with two-thirds to one-third treatments. Because of proton therapy’s ability to precisely target tumors with limited exposure to surrounding tissues, there are less side effects with treatment, which make it the ideal modality for hypofractionation.
For example, a study at MD Anderson Cancer Center showed a hypofractionated protocol for breast cancer cost $13,833 compared to the $19,599 cost of conventional radiation. Medicare reimbursement rates for hypofractionated treatment of prostate cancer show the cost of proton therapy at $26,050 with the cost of conventional radiation at a comparable $24,420. At Provision, prostate patients who choose hypfractionation cut their number of treatments from 39 to 20.
Harder to quantify are the cost savings from the reduced side effects and reduced radiation exposure proton therapy offers. For head and neck cancers, proton therapy reduces patient weight loss and the need for feeding tubes—factors that dramatically reduce the gap between proton and x-ray therapy, particularly toward the end of treatment. Proton therapy reduces the risk of pneumonitis, esophagitis, heart disease and secondary cancers due to radiation exposure for lung cancer patients. Recent studies show women treated for breast cancer using conventional radiation receive damaging doses to the heart and lungs. Pediatric patients see a long list of physical and neurological benefits from proton therapy.
Another MD Andersen study compared the cost of proton therapy and radiation in the case of patients with head and neck cancer, concluding the proton therapy cost just 6 percent more than intensity-modulated radiation therapy when taking into account the healthcare costs associated with weight loss, feeding tubes placement and resulting treatment re-planning and re-simulation because of greater side effects associated with IMRT.
This impact on a patient’s life after cancer is known as “quality-adjusted life years,” but Warwick agrees that’s difficult to quantify.
“It is difficult to put a price on improving someone’s quality of life,” he says. “It is a very inexact science and often varies in the eye of the beholder. It is easy to minimize having a feeding tube placed into your abdomen until you’re the one having the procedure performed.”
And yet, people—and their health insurance companies—are willing to pay for much costlier chemotherapy treatments to prolong life, if only for a few weeks or months. He cites an example of a drug for metastatic prostate cancer, shown to extend life on average by four months. The cost: $90,000.
“That’s double the cost or more for most proton therapy cases,” he says. “And this drug receives robust coverage from most commercial insurance payers, even though it is not even used to cure the cancer.”
It has not exactly been a banner year for Holly Caster.
Forced by an auto accident to leave her job and in the wake of related health problems, she noticed a nagging toothache that wouldn’t go away.
A visit to the dentist revealed a filling had been shoved up into her gum, but even after he fixed the tooth “the pain just go worse and worse,” she says.
She made the rounds of her dentist, an oral surgeon and ear, nose and throat specialists before a doctor told his nurse: “She needs a CT scan, now.”
They found adenoid cystic carcinoma, an uncommon form of oral cancer. Resulting surgery removed 70 percent of her left parotid or salivary gland and stripped the facial nerve to which a 2.4-centimeter tumor had been attached.
The good news: the cancer had not spread. However, to eliminate this risk, radiation therapy and chemotherapy were recommended. Because of the location of the cancer, conventional radiation typically results in a feeding tube and other unpleasant short- and long-term side effects. That made proton therapy the recommended route but required Caster to travel from Michigan to the Provision Center for Proton Therapy for treatment.
Fortunately, insurance approved the treatment, but the process has been disruptive. Caster, her sister, mom and kids have set up housekeeping in Knoxville for the more than two months she’ll be here for proton therapy combined with a chemotherapy course. That means financial stress on top of everything else.
But like many who find themselves in similar circumstances, Caster has received assistance from family, friends and friends of friends through the crowdfunding site, gofundme.com. (Her page is http://www.gofundme.com/xjrgf7c.)
Apple Wick set up the site for Caster, who describes her as “more than a best friend.” So far, the site has raised $3,100 for her cause.
Although the first known Provision patient to seek support by way of fundraising online, there has been a significant uptick in crowdfunding for healthcare expenses, with a number of sites starting up to fill the niche. Among them GiveForward, Healthline, FundRazr and StartACure, which focuses specifically on medical research work.
On the GoFundMe site, individuals in 2014 raised $147 million from about 600,000 appeals in the “Medical, Illness and Healing” category and 2014, so far in 2015, has hosted more than 740,000 medical appeals raising more than $197 million, according to a recent news article in The Buffalo News.
Proton therapy candidates are among those who may especially benefit from these campaigns. Because many private insurers don’t cover the treatment, patients may face paying for it out of their own pockets. A GoFundMe search returned 153 proton therapy-related pitches, ranging from a $247,000 campaign for a young Filipino girl with spinal cancer to $6,185 for the travel expenses of a family whose baby was diagnosed with a brain tumor. Read More
For any cancer patient, the automatic question to a diagnosis is: Why me?
Lou Lovingood may not have the answer, but she’s determined to make the most of an opportunity, which is how she’s come to view her experience with breast cancer.
She is the 500th patient to graduate from treatment at the Provision Center for Proton Therapy.
The announcement was greeted Thursday with balloons, a gaggle of Lovingood’s family and friends, local media coverage and Provision employees dressed in pink.
“Six months ago, I had no idea there was another graduation in my future,” Lovingood told the gathering. “This was not my plan, not my idea and certainly not my choice, but in the midst of the storm we have certainly felt God’s presence and are grateful.”
Lovingood was diagnosed in February with bilateral breast cancer at the Knoxville Comprehensive Breast Center where a mammogram found a 2 millimeter lump in her left breast and a subsequent needle biopsy discovered another 6 millimeter lump in her right breast. She had a lumpectomy in March and was advised by her surgeon to consider proton therapy because of the exposure conventional radiation would give to her heart and lungs. Studies have shown that women successfully treated for breast cancer with conventional radiation therapy are at significantly higher risk for heart disease and secondary lung cancer years.
When she walked into the Provision Center for Proton Therapy for her initial consultation, “I was scared,” she said.
It was hospitality coordinator Sharon Bishop, herself a breast cancer survivor, who reassured her.
“She looked at me and said, “You’re going to be okay,” Lovingood said. “My husband says she’s director of first impressions. She really touched my heart.”
Bishop, who herself has suffered heart damage from conventional radiation treatment, also was the one who convinced Lovingood to treat her cancer with protons.
“She said, ‘I would have paid any amount of money if I had had the option of proton therapy,’” Lovingood said.
For the Lovingoods, it was a big choice to make. Lou’s insurance provider, Blue Cross Blue Shield of Tennessee has denied coverage of the treatment—twice. Provision physician, Dr. Tamara Vern-Gross, is appealing a third time. In the meantime, the family decided to commit to paying for the treatment themselves if necessary. Lovingood is the first Provision patient to receive proton therapy for bilateral breast cancer.
“We made a family decision that was what we were going to do no matter what,” she said.
Provision Healthcare opened the proton therapy center in January, 2014, and since then has offered treatment to patients suffering from a variety of cancers including head and neck, lung, esophageal, prostate, brain, bladder, sarcoma, tongue, lymph and colon as well as pediatric cancers. The center, which has three treatment rooms, currently serves about 80 patients per month. Patients travel to Provision from across the country and around the world, including England, the Netherlands, Taiwan, Mexico and Brazil.
Lovingood’s experience with the insurance company, and her conviction about the benefits of proton therapy, have led her to see the opportunity in her breast cancer battle—urging insurance coverage of proton therapy.
“It makes me absolutely furious. It’s wrong for insurance companies not to provide the best possible care,” she said. “What I have learned is proton therapy is better, and it’s worth paying for.”