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Alexa Gash

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Tennessee cancer patient denied state-of-the-art treatment.

Alexa Gash had recently moved to East Tennessee with her husband, Peter, and one year old daughter. Peter had accepted a job as an Assistant Coach for the University of Tennessee Chattanooga Men’s Basketball team.  She was settling into her new life and going about a normal day when she discovered something strange while brushing her teeth – a painful growth in the back of her throat. Visions of the worst-case scenario raced through her mind which were soon confirmed. It was cancer, oropharynx squamous cell carcinoma to be specific.

Alexa quickly began the confusing, overwhelming educational journey familiar to most cancer patients. Her journey led her to multiple clinical opinions and a number of potential treatments. One of the early favorites was radiation therapy where X-ray beams would be directed through her body to destroy the tumor. However, this came with some pretty scary side effects.  Alexa learned that patients treated with conventional radiation therapy for her cancer typically suffer from a painful condition called mucositis caused by the excess radiation dose delivered outside of the tumor. Mucositis often leads to an inability to eat and significant weight loss. In some cases, patients require a feeding tube because they can no longer swallow. In more severe cases, patients never regain the ability to swallow. Most certainly Alexa would not be able to care for her one-year old daughter with these types of side effects.

Fortunately, Alexa’s journey did not end there. She discovered that she was a candidate for proton therapy and nearby Knoxville is home to one of only twenty-five proton therapy centers in the United States. Protons have a unique physical property that allows a radiation oncologist to deliver radiation to a patient’s tumor while sparing healthy tissue, avoiding many of the painful side effects of conventional radiation therapy that had so concerned Alexa. Her mind was easily made up. She would travel to Knoxville and get treated with protons for approximately seven weeks.

It was then that she realized there was another big hurdle to overcome before she could get cured. She had to obtain approval from BlueCross BlueShield of Tennessee to cover the cost of her treatment. She expected this to be a given considering the significant benefits proton therapy offered, especially when both her insurance company and the proton therapy center were non-profit East Tennessee companies committed to the public good … her good.

Despite her physician’s adamant support, BlueCross BlueShield of Tennessee denied the request for coverage for her proton therapy treatment, calling the treatment experimental even though it has been FDA approved since 1988, and has been used to treat cancer since 1954. Alexa appealed and followed the multi-step process her health plan required. This included a “peer review” by a physician retained by the insurance company with no background in oncology, let alone the specialty of radiation oncology.

The appeal process lasted almost 90 days. The growth protruded inside her throat making swallowing difficult and was a daily reminder of her predicament. BlueCross Blue Shield denied all of Alexa’s additional requests. Effectively denying decades of research, they claimed that benefits of less radiation have not been proven through randomized control trials. Even though Medicare has covered proton therapy for more than twenty years and the National Comprehensive Cancer Network guidelines have expressed support for proton therapy in the treatment of head and neck cancer, BlueCross simply said NO.

Alexa was at a loss.  Her family had paid their insurance premiums for years and now, when she finally needed the insurance company to fulfill its side of the bargain, they abandoned her. If Alexa were in Florida and covered by the BlueCross affiliate there, her treatment would be covered. If she were old enough to receive Medicare, she would be covered.

In recognition of the gap in coverage and the beneficial impact that proton therapy can have for cancer patients, several legislators have introduced legislation 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. These Bills have been introduced by Senators Doug Overbey (Senate Bill 0367) and Dr. Mark Green (Senate Bill 0210) and Representatives Bob Ramsey (House Bill 0523) and John Holsclaw, Jr. (House Bill 0883) respectively. There is an additional Bill carried by Representative Mark Pody (House Bill 0899) and Senator Mae Beavers (Senate Bill 0758) that, if passed, would prohibit insurance companies from holding proton therapy to a higher standard of clinical evidence than other forms of radiation therapy that preceded it.

Currently, the insurance company lobby is fighting the legislation and continues to shirk their responsibility to modify their coverage policies to keep up with technological improvements that offer the best treatment available. 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 Senator Bo Watson, the Senate Finance and Labor Committee chaired by Franklin’s Senator Jack Johnson and the House Insurance and Banking Subcommittee chaired by Representative Keisling from Pickett County, Tennessee. Senator Johnson has previously spoken out in favor of proton therapy in publicly supporting the development of Tennessee’s third proton center in his district.

Hopefully, the State Legislators can see through the insurance companies’ ploys of denying cutting edge treatment to cancer patients under the guise of a purported lack of clinical evidence and advance the bills supporting proton therapy. Fortunately, Alexa’s family worked out an arrangement with the Provision Proton Therapy Center to obtain treatment. Alexa fared well during her treatment, avoiding serious side effects and maintaining her weight throughout the process. Hopefully, future patients will not have to fight the same battle because the pending bills before the General Assembly will be passed, allowing the patient and their physician to determine their best course of treatment.

The non-profit patient advocacy group Tennessee Cancer Patient Coalition is encouraging cancer patients and caregivers to contact their representatives in support of the bills mentioned above.

 

Learn more about proton therapy at:  ProvisionProton.com OR proton-therapy.org

Dr. OZ Spotlights the Need for Insurance Coverage

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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.

The Dr. Oz Show learned of her case and invited Rumberger, a medical resident and then engaged to be married, along with Dr. Allen Meek, medical director for Provision Medical Group, to New York City to tape a segment focused on insurance denials for life-saving treatments. The show aired on WVLT Local 8, which also interviewed Dr. Meek for its morning and afternoon shows.

In the segment, produced by guest host Montel Williams, he and Dr. Oz interviewed Rumberger and Meek and discussed the insurance market’s “profit and loss” approach to patient care.

“That’s what they think of us as, a ‘loss,'” Oz said in the segment. “Insurance companies don’t really look at you as a patient…. They look at the bottom line.”

In the end, Rumberger’s treatment will be covered by insurance—which has approved her appeal since the original taping of the show. Others, however, are not so fortunate.

Lou Lovingood, a breast cancer survivor and Provision’s 500th patient, was denied by insurance on multiple appeals and is now having to pay out of pocket for treatment she received last year.

“Insurance companies can call themselves non-profit, but it’s just a joke,” she says. “I’m so glad that Dr. Oz has focused that light. Hopefully it will bring some attention to what’s happening here.”

The Proton Therapy Bill – 2016

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Tennessee ranks 22nd in cancer incidence rate but 5th in cancer death rates.

The most advanced radiation treatment in the world, proton therapy, is available in Tennessee, but because private insurers refuse to provide meaningful coverage, most Tennesseans do NOT have access to it.

Proton therapy should be covered for all commercially insured patients and Tenncare patients just as Medicare patients are covered.

However, since commercial insurers have, in general, refused to cover proton therapy, Senator Mae Beavers and Representative Mark Pody have filed the “Proton Therapy Bill” SB1773, HB1441 in the Tennessee legislature. Make sure your local legislators support this bill.

Visit our website:

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Go here to view the bill:
http://tncancerpatient.org/files/2017/01/Proton-Therapy-Bill.pdf

Provision’s Response to Biden Push for Cancer Cure

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Vice President Joe Biden’s recent commitment to lead a “moonshot” toward a cancer cure promises to deal a blow to the disease that has become the leading killer in the United States.

The initiative, kicked off last week, commits to bringing together a combination of therapies with “innovations in data and technology” to create treatment options that are ready for prime time—with the goal of making “a decade worth of advances in five years.”

Here at Provision, we couldn’t agree more. It’s something we work toward every day.

We believe the solution to a cancer cure is a combination of early detection along with both currently available and up-and-coming therapies that have the power to transform cancer treatment as we know it.

Here’s our view of a cancer-free future.

Ninety percent of cancer is treatable when detected early. If those at risk for a variety of cancers—particularly the big three: prostate, breast and lung—were screened appropriately, many of the cancer deaths we now mourn could be prevented.

For those who test positive for cancer, the healthcare system needs to, through research as well as financial support via insurance coverage, move toward treatments that kill the cancer but spare the patient and sustain quality of life.

Today, surgery, radiation and chemotherapy in various measures and combinations are the typical recipe for cancer care. All three of these remedies carry their own risks, from that of infection and complications in surgery to the collateral damage of radiation to the harsh toll chemotherapy takes on the entire body. Truly, the cure can be worse than the disease.

Here’s our vision of the future:

First, conventional radiation and most surgery should be replaced by proton therapy. Proton therapy is a proven, FDA-approved treatment option for those diagnosed with localized cancer such as found in the prostate, breast or brain. This non-invasive treatment reduces the side effects caused by conventional radiation therapy and surgery. A growing number of proton therapy centers are making this world-class option available to patients across the globe. We support their research in developing the best treatment plans and clinically demonstrating proton therapy’s effectiveness.

Second, immunotherapy offers the promise of a future without chemotherapy. By using the body’s own disease-fighting system to eradicate cancer, it eliminates the toxic, debilitating side effects now experienced by chemo patients and better prevents spread of the disease. Research should be dedicated to bringing this unique treatment to everyday application for cancers that now require chemotherapy.

And serious, strategic investment should be made in cancer prevention by encouraging healthy lifestyle choice and reducing environmental risks.

As Biden has said, for too long research has been stuck in silos, focused on narrow investigative tracks and lacking a clear, comprehensive, thoughtful vision that could actually move the needle on cancer mortality. Treatment is too often dictated by the financial interest of the health care industry rather than public and personal health priorities. Patients are too often relegated into the role of bystanders rather than active participants in their care.

We rejoice in the government’s fresh approach to this growing crisis. We are encouraged by the vice president’s willingness to seek the best answers to a problem that has touched his life and ours. We believe the answer is within reach—and we want to be a part of the solution. As Provision’s own ice-skating, cancer-surviving spokesman Scott Hamilton so eloquently puts it: “We want to help turn cancer upside down!”

 

 

St. Jude’s new center puts Tennessee on the proton therapy map

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With this week’s opening of a brand new proton therapy treatment center at St. Jude Children’s Research Hospital, Tennessee becomes one of just five states with two proton therapy centers.

There are now 19 proton therapy centers nationwide.

The $90 million St. Jude Red Frog Events Proton Therapy Center has three treatment rooms where children are already receiving proton therapy. St. Jude aims to treat 100 children at the facility by the end of next year.

“Proton therapy is an evolution in delivery of focused radiation therapy that allows us to deliver the highest possible dose to tumors while limiting damage to surrounding tissue,” said Thomas Merchant, chair of St. Jude’s department of radiation oncology. St. Jude is the first children’s hospital to establish a proton therapy center.

For Provision, which also treats pediatric patients with proton therapy at its center in Knoxville, St. Jude’s adoption of the up-and-coming medical technology is an important part of making it more widely known and available to patients who need it, says Bill Hansen, vice president of public relations and marketing for Provision Center for Proton Therapy.

“With St. Jude’s entry into proton therapy, Tennessee has become a center for quality cancer care for children and adults,” Hansen said. “And in a couple of years, when the Scott Hamilton Proton Therapy Center in Franklin, Tenn., proton therapy will be readily available to every resident of Tennessee as well as those in surrounding communities. Our state has become a model for expansion of proton therapy around the world.”

Scott Hamilton, whose growth as a child was hampered by a later-discovered brain tumor, has become an advocate for cancer patients as well as proton therapy. The Scott Hamilton CARES Foundation is developing the new Middle Tennessee Center in partnership with Provision.

“I can’t think of a better Christmas gift for the patients at St Jude,” Hamilton says. “Onward and upward!”

Proton Patient Takes Up Insurance Cause

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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.

Lou Lovingood stands in front of Provision's graduation bell with family and friends.

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.”

WBIR Chief Meterologist Todd Howell pays a surprise visit to 500th patient, Lou Lovingood.

WBIR Chief Meterologist Todd Howell pays a surprise visit to 500th patient, Lou Lovingood.

Tennessee Lawmakers Take Note

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Tennessee lawmakers this week failed to pass a law that would make proton therapy an available treatment option to cancer patients. Perhaps they should consider that most residents of the state support the measure—and are willing to take their opinions to the polls.

In a telephone survey conducted by the Tennessee Cancer Patient Coalition, 84 percent of respondents said insurance companies should be required by law to cover medical treatments that offer a cancer patient the least risk of complications, both short and long term, no matter the cost. And 78 percent said health insurance companies should be required by law to approve the newest and most effective medical treatments even if those therapies cost more than treatment currently offered.

The Cancer Patient Choice Act would not increase the cost of cancer treatment for patients in Tennessee. It would simply level the playing field. The act requires insurance companies to cover proton therapy at the same level they currently cover other forms of radiation treatment. Thus, it will not increase the cost of health insurance at all.

In fact, the cost of health care for most patients is reduced, because proton therapy targets radiation to the cancer and spares much of the surrounding tissue—reducing the risk of developing cancer in other parts of the body after the treatment is finished.

Improving quality of life was important to survey takers too. Eighty-six percent agreed that health insurance companies should be required, by law, to approve treatments that have been shown to offer better health, comfort and quality of life for cancer patients.

Don’t let lawmakers sit on their hands! Join the growing number of voices asking Tennessee to provide equal insurance coverage for proton therapy. Call your legislator or join our Facebook community to express your support for the Cancer Patient Choice Act. Lives depend on it. Tennessee lawmakers

Senate Fails To Protect Cancer Patient’s Rights

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The Senate’s refusal this week to vote on a bill that would allow cancer patients the option of proton therapy for their treatment, is disappointing to cancer survivors like David DeBusk.

“Most people never honestly ever think about health care until it is in “their face,” says DeBusk, a small business owner in Sevierville, Tenn., who last year found himself in the advanced stages of prostate cancer with a poor long-term prognosis. The recommended procedure was a radical prostatectomy, which doctors said should give him five years of good-quality life.

DeBusk opted for proton therapy instead. He is now completely cancer free.

DeBusk tells the fantastic story (READ THE LETTER HERE) of his journey to health via proton therapy in a letter to Tennessee Rep. Doug Overbey, urging passage of the Cancer Patient Choice to allow other patients the same option for treatment as he had.

“There are a lot of people suffering from cancer in Tennessee, that in the absence of insurance companies approving Proton Therapy for treatment, cannot afford to pay for the Proton treatment.,” DeBusk wrote. “They are being forced to take undesirable alternative treatments including surgery and I have seen first hand several patients that are experiencing ongoing issues from the surgery.”

DeBusk says legislators in the Tennessee Assembly need to act in the interest of their constituents and pass the Cancer Patient Choice bill, which would provide equal coverage for proton therapy as other radiation treatment alternatives.

“We all expect all elected officials to be in touch with really what is going on in ‘their’ communities,” he says. “Sadly, I have to say that in my opinion, they are not.”

Join David DeBusk in urging your legislator to pass the Cancer Patient Choice bill. Help pave the way for more Tennesseans to live longer, healthier, more productive lives.

Fighting A Battle On 2 Fronts

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Kimberly Krause battled breast cancer at age 39. She doesn’t think patients like her should have to battle insurance companies at the same time.

Thanks to annual screenings—breast cancer runs in her family—doctors detected the disease in its early stages and recommended surgery along with radiation treatment.

Proton therapy, an intensive form of radiation that targets the tumor but spares much of the surrounding health tissue, was recommended because of the tumor’s location so close to her lung, raising the risk of a secondary cancer from a traditional radiation treatment.

But when Krause tried to get the treatment approved through her insurance company, Blue Cross Blue Shield of Tennessee, the provider denied the claim.

“The letter was not very nice,” Krause says, adding that the company said for her diagnosis, proton therapy was not the optimal treatment.

Without insurance, proton therapy costs $38,000-$50,000 depending on what type of cancer a patient has and how many treatment sessions are required.

Krause was determined to have proton therapy. Women who receive radiation under the age of 40 are at particular risk for cancer from traditional radiation treatment. Women who received traditional radiation therapy have been shown to have higher rates of heart disease following treatment. Because beams of protons can be channeled so precisely, and because no protons escape beyond the tumor site, proton therapy prevents damage to the heart and lungs.

“I would’ve had to take out a loan and just pay for it over time,” Krause said.

Fortunately, as the Provision Center for Proton Therapy’s first breast cancer patient and a participant in a clinical trial, she was able to receive free care. She was thrilled with the results—she’s now cancer free, had no side effects from the proton therapy and loves the staff and care she received at Provision.

But Krause said she met a lot of others during the course of her treatment who faced the dilemma of having to pay for their own care because insurers like Blue Cross Blue Shield said no.

“I was lucky with my case,” she says. “It’s insane that the insurance companies aren’t paying. It’s just crazy.”

So far, legislators in Tennessee are siding with insurance companies. They’re refusing to vote for legislation would make proton therapy equivalent to other forms of radiation therapy for cancer that insurance companies currently cover. Don’t let the insurance companies make life or death decisions any longer. Call your legislator and urge him or her to pass the Cancer Patient Choice Act.

Dr. Andrew Lee on Proton Therapy

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Proton Therapy isn’t some obscure, experimental treatment for cancer. There are fourteen proton therapy centers operating in the country and 10 more in development, many on the campuses of world-famous medical centers including Emory, Mayo Clinic and MD Anderson.

Dr. Andrew Lee, medical director of the Texas Center for Proton Therapy at MD Anderson, has spent lots of time in Tennessee of late, working with proton therapy advocates and patient survivors to convince legislators that this specialized form of radiation therapy needs to become available to all cancer patients in Tennessee.

In this interview Lee offers a succinct explanation of the treatment technology and why it’s so effective.

“X-ray therapy typically, even with high energy, will deposit most of its radiation before the tumor, and will keep on depositing radiation dose after the tumor,” he says in a radio interview with station KERA in Texas. “Whereas in proton therapy, you may have some entrance dose, but the majority of the radiation is deposited at the site of the tumor and there’s no radiation deposition after the tumor.”

This means fewer side effects than traditional radiation and a lower risk of developing cancer in other parts of the body because of the extra dose of x-rays. Proton therapy is effective for an array of cancers including prostate, breast, lung, head and neck and pediatric cancers.

The problem is, many candidates for the treatment cannot receive it due to the failure of private health insurance carriers to offer coverage for proton therapy. So far, the Tennessee Assembly has chosen not to give cancer patients and their doctors the freedom to make the best choice for the most effective treatment.

Please contact your legislator and tell them to support the Cancer Patient Choice Act. Help fight for the right to choose the best treatment for cancer therapy.