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August 2015

Price of protons

By | Breast Cancer, Cancer, Insurance Coverage, Pediatric Cancer, Prostate Cancer, Proton Therapy, Scott Warwick, Uncategorized | No Comments

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.

That’s just not true, says Scott Warwick, vice president for strategic initiatives and program development for Provision Healthcare and chair of the National Association for Proton Therapy.

“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.”

Lenoir City single mother fundraising after insurance won’t pay for proton therapy cancer treatment

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LENOIR CITY (WATE) – A single mother with four kids says she is at a crossroads after her insurance provider refused to cover her treatment.

Marla Cortez, 42, has an aggressive form of breast cancer, located right next to her heart and lung. Her oncology team prescribed proton radiation therapy, but unfortunately her insurance won’t cover the treatment. Cortez said she has appealed Aetna Insurance four times, but her only recourse is to pay $75,000 out of pocket.

“It’s very frustrating. You talk to everyone and they say tell you this is what you need. Then this insurance company, this big conglomerate, says no you don’t need it,” Marla said.

In March, a state Senate committee refused to act on a bill that would require health insurance companies to cover proton therapy treatment for cancer at the same levels it covers other radiation therapies. Knoxville’s Provision Center for Proton Therapy was behind the bill, but the insurance industry lobbied against the bill. That decision has left Cortez with very few options.

“We’ve been in this battle for a while even though proton therapy has been around for a long time. It’s probably more political than the technology itself,” explained Bill Hansen with the Provision Center for Proton Therapy, about how patients like Marla struggle to get covered by insurance providers.

“What we tend to see is that we treat a lot of children and older adults because Medicare covers it. So it’s been the people in the middle being denied this treatment,” he added.

The Lenoir City community has come together to help the single-mother raise money for treatment. Di’lishi, a new yogurt bar in Lenoir City created “Marvelous Marla Monday.” On Monday proceeds from yogurt purchased will benefit Cortez.

A friend of Cortez has also set up a GoFundMe page. The page has already received over $7,000 in donations.

“This is pretty overwhelming,” Marla said, about the community support.

Hansen says they’re pushing another bill in 2016 that would cover proton therapy for cancer patients.

Provision patient has pre-treatment health makeover

By | Cancer, Culture of Care, Dr. Marcio Fagundes, Exercise & Nutrition, Prostate Cancer, Tennessee, Uncategorized | No Comments

When Hal Livergood came to Provision for treatment of his prostate cancer last February, he discovered he was living just two miles from the only proton therapy center in the Southeast. He was impressed by the brand new facility—“like coming into a resort,” he says. His doctor and personal research told him protons were the best treatment option for his disease.

There was just one problem.

“Dr. Fagundes said, ‘You need to lose weight,’” Livergood says, of Provision Center for Proton Therapy’s medical director, Marcio Fagundes. Otherwise, treatment would not be an option.

At 455 pounds and faced with a life-threatening disease, he wasted no time.

He met with nutritionist Casey Coffey at Provision Health and Performance, adopted a clean, real, whole foods diet and began exercising two hours a day—cardio in his home pool spa plus a strengthening regime.

“I lost 50 pounds in just a few months,” Livergood says. By the time he was ready to start proton therapy, he had lost 90 pounds in all. His edema disappeared. He felt better.

“Between Casey and Dr. Fagundes, they’re saving my life in more ways than one,” he says.

Livergood’s case may have been extreme, but early research is showing that tackling lifestyle changes prior to treatment can help improve long-term outcomes for cancer patients.

A recent article in the Washington Post documented this “pre-habbing” phenomenon, citing a study in the journal Anesthesiology that showed patients diagnosed with colo-rectal cancer who adopted a program of exercise, nutritional counseling and relaxation four weeks prior to surgery experienced better recovery than those with eight weeks of rehabilitation following the procedure. Research findings for non-cancer-related operations indicate the same, although more study is needed to determine the broader impacts of pre-treatment lifestyle interventions.

Some research shows a positive impact of healthy lifestyle choices during cancer treatment. For example, exercise has been shown to help alleviate fatigue in breast cancer patients and relaxation exercises help improve mental health and sleep patterns for cancer patients. Other research shows improved immune response and response to cancer treatment with particularly dietary supplementation or interventions.

In spite of the lack of studies into the impact of diet on cancer treatment outcomes, Coffey says “sugar is the only fuel cancer can survive on,” so she advocates a diet in which her clients that reduces carbs and focuses on proteins and whole, unprocessed foods. She also works with patients to identify foods they enjoy and build a plan around making lifestyle change workable.

“I had lost thousands of pounds over my lifetime,” Livergood says, with diets ranging from liquid to fat free. But after learning about the chemical reactions of the food in the body, necessary balance between protein, carbohydrates and fat he’s made changes for the long-term. And he says he doesn’t even want the junk food he once ate on a regular basis.

“The goal is to control carbohydrate intake.  We need a balance in nutrients, protein, fat and carbohydrate,” Coffey says.

When patients understand the way food affects their health and make changes for the right reasons, “the desire is just not there,” she says. “”You also have that thought process, is it really worth it?”

“’If it’s killing me,’ I think, ‘I don’t want to eat it,’” Livergood adds.

Support at home has also been crucial, and Livergood’s wife, Nancy Lee, has been there every step of the way—losing 18 pounds in the process herself. Coffey took her to Trader Joe’s, patient consults frequently include a grocery shopping trip, showing her products that support their new lifestyle.

“It’s one thing to sit in a room with somebody,” Coffey says. “I say, ‘I want you to start shopping like you would normally shop. What does it look like when you’re trying to implement something? We are so programmed to our own pattern of shopping and eating, and it’s eye opening for patients and their families to start looking at food in a new way.”

Now that he’s in treatment for his prostate cancer, Livergood says he is suffering through a low residue diet, a low-fiber regimen required for prostate cancer treatment that requires patients to cut out legumes and whole grains and reduce dairy consumption. The treatment and related hormone therapy have also left him feeling fatigued and limited his exercise routine.

Once he’s done, however, he plans to tackle the weight loss anew.

“I’ve got another 120 pounds at least to lose,” he says. “I’ve got to stay on the program.”

Kentucky patients flock to Provision

By | Cancer, Clinical Care, Culture of Care, Kentucky, Patient Experience, Pediatric Cancer, Prostate Cancer, Proton Therapy, South, Uncategorized | No Comments

A growing number of Kentuckians are coming to Provision Healthcare for cancer treatment and leaving as advocates of proton therapy in their home state.

More than 20 patients from the Bluegrass State have completed treatment at the Provision Center for Proton Therapy, and the state serves as one of the largest sources of patients next to Provision’s home state of Tennessee. Patients have come to receive treatment for prostate, breast and lung cancer and lymphoma and have included two pediatric patients suffering from brain tumors.

Proton therapy, for me, was a wonderful discovery,” said Glenn Ross, owner of Investment His Way in Elizabethtown, Ky. “I would absolutely recommend proton therapy to anyone diagnosed with cancer.”

After completing treatment for prostate cancer in June, Ross returned home determined to spread the word across the state, sending a release out to Rotary clubs statewide and setting up a support group for proton therapy patients. He has three presentations on proton therapy scheduled so far.

He’s joined by Richard Sutherland, a fellow prostate cancer sufferer with whom he played golf—six rounds in seven days—and marveled at the minimal side effects they suffered while in proton therapy.

“I’ve got 15 or more friends who have had surgery or conventional radiation for prostate cancer, and I was aware of all the side effects they experienced,” Sutherland said. “Then I started reading about proton therapy. I contacted about 25 patients who had the treatment, and every one of them had the conviction that they did the right thing. During my treatment I played a lot of golf. I ate a lot of good food. And I had very few side effects.”

Richard Sutherland & Glenn Ross

Sutherland, a principal of Frankfurt-based Stantec Consulting, an engineering firm that designs transportation projects throughout the U.S.—Sutherland oversees its Kentucky projects—said he is also looking for opportunities to spread the word about Provision.

“I’d shout about it from the mountain-tops if I could,” he said. “Proton therapy is just little known among the population.”

Eleven-year-old Emma Ferrell of Winchester, Ky., found proton therapy to be a relief after enduring both regular and high dose rounds of chemotherapy for a brain tumor.

“It was pretty wonderful,” says Linda Ferrell, Emma’s mother. “Emma’s been through quite a bit over the last year. With the treatment at Provision, it was pretty easy. I’m a huge advocate for proton therapy.”

Emma and her mother were able to stay at the local Ronald McDonald house and, when Emma felt up to it, enjoyed trips to the zoo, the mall and a local herb garden.

For Lydia P., the trip Provision Center for Proton Therapy offered hope as her son Philip—after three surgeries and an unsuccessful immunotherapy treatment in Germany—continues his battle with stage 4 brain cancer.

“I prayed and said, ‘It’s got to be quick and it’s got to be covered (by insurance),” she says. “For me, it’s just the hope that he’s going to live and that he’ll have two-thirds less of his brain that’s irradiated.”

And the experience at Provision provided a place of refuge in a most difficult situation, Lydia says.

“It’s unusual that you have a group of people that care so much about the patients,” she says.

Crowdfunding becomes source of support for those with life-threatening illnesses

By | Cancer, carcinoma, Fundraiser, Insurance Coverage, Proton Therapy, Survivors, Uncategorized | No Comments

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

Auto enthusiasts support Provision patient with surprise car show

By | Culture of Care, Patient Experience, Pediatric Cancer, Proton Ambassadors, Proton Therapy, Uncategorized | No Comments

When Philip P. arrived at the Provision Center for Proton Therapy for his last treatment and graduation ceremony, he got more than he bargained for.

Ninety Corvettes, sports cars and hot rods filled the parking lot as more than 200 people from the East Tennessee Corvette Club and its sponsor, Reeder Chevrolet, responded to the call to give Philip, a car lover—of Corvettes especially—his own personal car show.

The 13-year-old from Kentucky, who is suffering from stage 4 brain cancer, made his way with two of his brothers around the lot, sitting in each car and taking a few joy rides.

The event was pulled together quickly, with the help of Provision’s Proton Ambassadors Vince Sica and Joe Hamby (the second patient to be treated at Provision), former ambassador Tom Zuraf and Jerry McDaniel, fixed operations director for Reeder Chevrolet.

McDaniel said he came back from vacation to find an email recruiting Corvette owners for the event—but just three or four had signed up.

“We weren’t getting a response, because it was happening in only a week,” Sica said.

McDaniel went to work, sending out emails to club members, and in the end more than 30 cars showed up. So did an additional 60 autos including a Porsche, two Lamborghinis and various hot rod and muscle cars.

“Considering we had a week to put it together, it worked out very very well, and, most important thing was we gave the young man a great experience to remember,” says Hamby.

McDaniel also went to work on giveaways, and club members donated a trunk full of memorabilia including signed Nascar items, model cars, books and a large collection of hats.

“That made his day,” Hamby said.

That evening, the Corvette club held its monthly meeting, where Sica thanked those who participated in the Provision car show.

“They were all personally, personally touched with the family camaraderie here (at Provision) and the closeness with Philip,” Sica said.

For McDaniel, it was also an opportunity to support proton therapy, something he has become an advocate of through his relationship with Zuraf who was treated with proton therapy and is McDaniel’s neighbor.

“The way Tom has explained proton therapy process, I guess I would say I’m a pretty good advocate of that myself,” he said.

Auto enthusiasts support Prfovision patient

 

Kentucky Family Seeks Out Proton Therapy in Knoxville

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As with all of her  children, it was when Linda Ferrell saw  the  first image  of her tiny daughter that it felt like she was really hers. That initial connection came not through a sonogram but a photograph of her fourth child, Emma, who made her entrance into the family from China a few months later.

“The picture is what’s pretty amazing,” says Linda Ferrell. “It was love at first sight.” Fifteen-month-old Emma joined a seven-year-old sister, also from China, plus two older brothers, Linda and husband David’s  biological children, to complete the family.  And life was good as Emma excelled in school, played softball, grew up.

Then in the spring of 2014 she got sick. There were headaches. She lost her voice. She lost 10 percent of her body weight. Her pediatrician kept insisting it was a virus. “That went on almost a month,” Linda says. When Emma was finally admitted to the hospital, an MRI showed a brain tumor encasing her entire left ventricle and making its way toward the right.

“You immediately think of the future — a future possibly without her,” Linda says. “But that is so brief. We’re a family that wants to find solutions, and we’re not going to waste our time crying. We’re going to find out how to help her. She didn’t deserve anything less than that.” Emma’s doctors didn’t mention proton therapy, but Linda did her research online and discovered it as a treatment option particularly ideal for pediatric patients. Unlike conventional radiation, protons deposit their energy directly at a tumor target, sparing much of the surrounding, healthy tissue — especially important for a growing, developing brain. Originally planning to travel to Seattle from Kentucky, she called Provision Proton Therapy Center and spoke with Dr. Matt Ladra about Emma’s tumor, which she describes as “relatively rare and very aggressive. One of the biggest reasons we chose Provision is that Dr. Ladra really did his due diligence,” Ferrell says. “He spent a lot of  time talking to experts who knew about Emma’s cancer.” He concluded she was a candidate for proton therapy.

First, there was surgery — which removed a “good portion” of the tumor. Six rounds of chemotherapy, followed with a subsequent highdose round in an attempt to further reduce the cancer cells remaining in her body. Then there was a stem cell transplant to boost recovery of her white blood cells. After this physical onslaught, including months spent in and out of the hospital, Emma and her Mom made the five-hour journey to Knoxville where they stayed for seven weeks of proton therapy  treatment at Provision Proton Therapy Center. Treatment at Provision provided welcome relief. Emma responded well to proton therapy, experienced only minor fatigue and retained a good appetite most of the time, gaining weight she had lost during chemo.

“It was pretty wonderful,” Linda says. “Emma’s been through quite a bit over the last year. With the treatment at Provision, it was pretty easy. I’m a huge advocate for proton therapy.” The Hospitality Department at Provision helped the Ferrells arrange their travel plans, suggested activities around town such as the Knoxville Zoo, and was there for them every step of the way during their stay in Knoxville. “The guidance that we received from everyone at Provision made the hardship of being away from home a little bit easier,” said Linda.

The road to recovery is not over yet. Emma still struggles with her appetite. This year she goes back to school, a process Linda knows will be challenging as she battles the lingering effects of chemo and a year practically lost because of her illness. But she has endured amazingly so far. “She’s stoic, she’s stubborn, and that’s really what got her through it,” Linda says. Unselfconscious over her scar and hair loss, through the surgery, chemo and physical challenges, ‘she never shed a tear,’ she says. The experience has brought the family closer, especially Emma and her older sister, Sarah, now 19 and a junior pre-med student. Since Emma got sick, Linda says, Sarah has decided to specialize in pediatric cancer.

With a diagnosis like Emma’s, “your whole life changes,”  says Linda. “It doesn’t end once you’re treated. We don’t know what the future’s going to bring. “But we’re so thankful to have her.”

Provision center perfect destination for doctor and his young patients

When Matt Ladra learned of the opportunity to practice radiation oncology at Provision Healthcare in Knoxville, Tenn., he was a bit skeptical. “I had been thinking about California,” his home state, Ladra said. But the avid outdoorsman, who’d never visited East Tennessee, didn’t realize how well it would suit him — both personally and professionally. “Provision is a pretty unique model for proton centers,” says Ladra, who came from a Pediatric Proton fellowship at Massachusetts General Hospital/Harvard Medical School. His experience also includes a master’s degree in public health and a research fellowship with St. Jude Children’s Research Hospital at a project in Rabat, Morocco. In 2005 he received the Arnold P. Gold Humanism in Medicine Award at Tulane School of Medicine for students who embody ideas and attitudes lending to humanism in medicine. Provision’s innovative approach to cancer care appealed to Ladra, whose experience includes a number of articles in peer-reviewed medical journals, particularly focusing on pediatric cancers. Proton therapy is recognized as a uniquely ideal alternative to conventional radiation for pediatric cancer, in which the goal is to spare as much of the child’s growing, developing body as possible from damage caused by the treatment. Protons, unlike x-rays, can be specifically targeted to a tumor, resulting in no exit dose of radiation to the patient and a reduction of the impact on healthy surrounding tissues and organs.

Ladra works with a patient’s primary care physician and pertinent specialists to obtain records and learn about the case. Then he takes time with each patient and his or her family to determine the best route of treatment. Ladra was the leading radiation oncologist in the care of Ehkam Dhanjal, a pediatric patient who traveled from England to Knoxville for proton therapy treatment of his brain tumor. In Dhanjal’s case, the consultation was done via Skype to limit the amount of travel time required for his family.

“We walked around the center with the computer so they could see everything,” Ladra says.

For pediatric patients in particular, Provision works closely with partner health care providers to ensure that all of their needs are met. Pediatric endocrinologists, medical oncologists, nephrologists and anesthesiologists are among those who become involved in children’s care.

“There’s a much more multi-disciplined approach with pediatric cases,” he says. Depending on the rarity of the cancer, he will consult with experts across the country to determine the best course of treatment for a particular patient. And, as it turned out, Ladra found Tennessee a pretty nice place to live, too. He enjoys weekends hiking and fly-fishing in the nearby Smoky Mountains, as well as the life-style of Knoxville’s vibrant downtown. He says patients appreciate Knoxville as an ideal place to come for treatment. For out-of-towners, it is easy to navigate and offers many options for recreation and relaxation when patients aren’t in treatment. When they are, he says, the ambience and friendliness of a smaller health care cam pus helps patients and their families feel at home. “Everyone makes them feel like they’re part of our family,” he says. “You can’t beat that.”

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