Clinical trials have a vital role in the advancement of medicine. Physicians rely on sound clinical evidence which meets strict scientific standards, along with their personal experience and knowledge of the patient, to guide treatment decisions. Medical societies and insurance companies also use the results of studies to create treatment and coverage guidelines.
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.
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.
From carney kid to cancer survivor, life hasn’t followed a predictable trajectory for Jim McBride. Nonetheless, this businessman turned pastor and movie producer sees divine purpose in every step.
McBride, a pastor and producer of several popular Christian movies including Fireproof and Facing the Giants, recently completed treatment for prostate cancer at Provision Center for Proton Therapy.
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.
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.”
Qualifying for proton therapy is one thing. Paying for it can be another.
Although Medicare covers proton therapy for seniors with cancer and most private policies provide coverage for children, patients who fall in between can have difficulty getting payment from their private insurers.
There are things that patients can do to help. All incoming patients to Provision Center for Proton Therapy receive a fact sheet (click here to download fact sheet) to give them tools to fight for coverage of proton therapy—for themselves and for others.
“We believe it’s important for patients to be empowered to fight for the coverage they deserve when facing a cancer diagnosis,” says Rhonda Turner, manager of financial services at Provision Center for Proton Therapy. “We know that we won’t always win every case, but together we can improve our chances for success.”
Here’s what financial services does to assist in the insurance process:
- Letter of medical necessity and/or recommendation fo treatment choice from other provider(s)
- Peer-to-peer review calls
- Individualize appeals
- Multiple levels of appeals, including external reviews
- Assist with patient appeal/grievance
Here’s what patients can do to help:
- File a patient grievance letter (supported by Provision staff)
- Conference call with us and your insurer
- Contact your employer—some employers can override insurance coverage decision
Provision patients can also help in the fight for others, writing letters to insurance providers, sharing their stories on social media and contacting elected officials.
“Public pressure is the best way to ensure coverage of proton therapy in the future,” Turner says. “Nobody can communicate the need for proton therapy better than those who are being denied access to it.”
When Terry Vinson first felt a small grown the size of a pinkie fingertip on his neck, he dismissed it as a harmless cyst.
Even two weeks later, when it had doubled into the size of a thumb and then doubled again the following week, he had not yet sought medical help.
“I’m in medical sales,” Vinson says. “I should have known better.”
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.
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.