Presentation at 4Men Prostate Cancer Support Group
Avow, 1095 Whippoorwill Lane, Naples, FL 34105
Thank you to everyone who has called or emailed your elected representatives in Congress to speak up for proton therapy. While we will not know the outcome for several weeks, we know that we are doing everything possible to fight for patient access to proton therapy.
We are nearing completion of our expansion project, and expect to begin treating patients in our new treatment room in early December. It is equipped with the latest pencil beam scanning and will be the second room we bring online with this technology. Once the new room is operational, our plans are to retrofit our blue gantry room with pencil beam scanning beginning early next year, eventually making this form of treatment available in three treatment rooms. When our expansion and upgrade project is complete, we will have a total of five treatment rooms: four gantries and one fixed beam. These additions and improvements will enhance patient care and lead to high quality outcomes for more patients.
Stuart L. Klein
In the fall of 2013, less than two years after finishing his proton therapy in Jacksonville, a South Carolina UF Health Proton Therapy Institute alumnus realized he knew of several other proton alumni who lived within a short drive of his home. So he and his wife decided to host a small local get-together. To be exact, they invited ten other local couples to their home for some proton-themed fun, food, adult beverages, and camaraderie.
The host was Ron Nelson, author of the book PROTONS versus Prostate Cancer: EXPOSED, over fifty articles for The After Proton Blog, and a frequent speaker at the Institute’s prostate cancer clinics. Recalling the 2013 proton party, Ron said, “It felt like a little taste of what we all appreciated so much while being treated in Jacksonville. Nothing quite compares with that feeling or the unique connection we developed with each other, having walked the same path.”
Ron continued, “The party was actually a completely uncharacteristic thing for me to do. I’ve never been a party person, rarely went to them and certainly never hosted one. I’m still not exactly sure why, but it somehow seemed like the thing to do. So we did.”
Each year since then Ron and Lucy have continued what has become a tradition of hosting a local annual get-together for prostate cancer survivors treated with proton therapy. The mission is to provide a local venue for proton alumni to meet, reunite, and celebrate their good fortune together. “We rekindle our connection,” said Ron. “Even a strong bond needs nurturing.”
Ron calls this annual event “Empty, Drink, & Be Merry,” an inside reference that only prostate cancer patients will understand and appreciate. And he is steadfast that it’s strictly a party—not a fundraiser, support group, or educational forum. Ron and Lucy provide food and beverages, and each year Ron devises a proton-themed game with “fabulous prizes donated by the Institute,” where most of the men were treated. The coveted grand prize is a well-guarded secret, and always a big hit.
Ron and Lucy make a concerted effort to be inclusive. Although most of their guests were treated here at the Institute, a few were treated elsewhere. And while almost all the men are prostate cancer survivors, guests have occasionally included survivors of other cancers treated with proton therapy. The guest list has even included men yet to be treated, possibly still undecided about how to proceed, and interested in hearing more about proton therapy from those who know.
And Ron’s little proton party is no longer strictly local. “Some drive several hours within South Carolina, and we’ve even had guests from North Carolina, Georgia, and Florida who stay overnight in a hotel just so they can celebrate with this group of amazing people,” said Ron. “UF Proton deserves a lot of credit for instilling such patient unity, and we celebrate them as well as our good fortune in discovering proton therapy.”
What does all this prove? “It’s simple,” says Ron. “Proton people are happy people who like to party together!” That sums it up nicely.
Dr. Indelicato and Theodor Lonrusten Midttun
Theodor Lonrusten Midttun of Norway was just 3 years old when he was diagnosed with a brain tumor. Five years later, he received the “all clear,” and with his parents and sisters returned to the UF Health Proton Therapy Institute in Jacksonville to celebrate.
His father Teddy said, “we promised each other 5 years ago, if everything went good, to go back to Florida and do all the good things we experienced, without the cancer clouds and worries hanging over us.”
Happily, they received good news in August and made the journey back in September. Theodor’s parents said Jacksonville made a huge impact on the family during the time they were here for proton therapy. His father Teddy credits the “American spirit, humanity and professional attitude” that gave them hope and strength to get through the hard times. “People care in a way that was not too touchy, but was encouraging. It felt like everyone wanted the best for Theodor,” he said.
Today, 8-year-old Theodor loves gymnastics, and when he’s in Florida, loves the ocean – especially when playing in the waves with his sisters Bertine, 10, and Mathilda, 5. His parents, Heidi and Teddy, say Theodor enjoys the simple things in life and has a kind heart, ready to lend a helping hand to his classmates and anyone in need.
“Associating our art gallery with Karen L Cranford’s* name is an absolutely perfect connection,” said Bradlee Robbert, Director of Operations at the UF Health Proton Therapy Institute. “By all reports, she was quite a spitfire who loved color and things that sparkled. This gallery has both.”
It has been over five years since Karen and her mother travelled from North Carolina to seek treatment for Karen at the Institute. It’s a trip that was made all the more stressful because Karen’s father had recently succumbed to an unexpected cardiac event.
But, as would be expected, Karen and her mother found peacefulness and an exceptionally caring staff at the Institute. Some of that came through the art gallery and artists-in-residence who worked with patients, transforming nervous moments into pleasant exchanges and a sense of serenity. For both mother and daughter, it meant comfort in times that usually would have been filled with anxiety.
Seeing how important it was to Karen, her mother, Mrs. Cranford, made a contribution so that other adults — as well as children — could benefit from art therapy through the art gallery and the Child Life program through the Children’s Fund.
In addition, Mrs. Cranford’s gift will support the Karen L Cranford Endowment for Head and Neck Cancer Research that provides support in perpetuity for research at the Institute. “We are grateful for Mrs. Cranford’s generous gift in the loving memory of her daughter Karen, a remarkable woman,” said Nancy P. Mendenhall, MD, medical director of the UF Health Proton Therapy Institute.
*Please note: Karen L Cranford did not put a period (.) after the initial L in her name.
Almost 98% of the patients treated at the UF Health Proton Therapy Institute are treated on research protocols so it stands to reason that our annual fundraising golf tournament — Play Golf. Fight Cancer.® — would dedicate funds raised to research. This year’s 15th Anniversary Tournament, held October 21st at World Golf Village, is no exception.
Stuart Klein, Executive Director of UF Health Proton Therapy Institute, told attendees “Your support of the proton research fund gives us the ability to perform research that is changing the way cancer treatment is handled in the United States and around the world.”
Since opening in 2006, the Institute has treated more than 8,500 patients from across the U.S. and from many other countries. Among the patients already benefiting from proton therapy are those with prostate cancer, pediatric malignancies, sarcomas, Hodgkin’s lymphoma, lung cancer, pancreatic cancer, head, neck and brain tumors as well as breast cancer and eye tumors.
The event had impressive support from IBA, .Decimal and Shepherd along with important backing from a variety of other sponsors.
“It takes away my pain,” said Rozina Behrooz, coordinator of Residency and Fellowship programs for the UF Health Proton Therapy Institute. “I go every Monday evening. It’s rare for me to miss a class because it helps me so much. Why would I want to miss it?”
There are three classes on Mondays, one for patients and two for staff, taught by Marcy Knight. Ms. Knight has a special certification in yoga for radiation oncology patients so she is especially “in tune” to our Institute patients. The help she gives patients is nothing short of miraculous some say.
Rozina tells a story about leaving work and walking to her car one evening after yoga class. Part way to her car she realized that her joints that are usually painful weren’t hurting at all. She’s sure it’s because she took her regular yoga class before leaving the Institute.
Rozina recommends yoga to other staff members and suggests it to Residents and Fellows regularly. She points out the benefits of relaxing, flexibility, less pain especially joint pain, and immediate benefits. If others say they would come but they don’t have a mat, Rozina points out that the program has extra mats they can use. Or if getting down on the floor is an issue, chair yoga is an option. The person does yoga exercises while seated in a chair and gets the benefits of regular yoga.
For anyone interested, yoga classes are free to participants. Classes are held in the Research Room. Wear loose, comfortable clothing and shoes. Bring a mat if you have one. If you don’t, we’ll find one for you. Classes are at the following times:
It’s not uncommon for patients who have completed their treatment program and are satisfied with their experience to say, I want to give back. What can I do to help others who have been diagnosed with cancer and are looking for information? It was with this patient initiative that the UF Health Proton Therapy Institute began our Ambassador program approximately 10 years ago.
Currently, we have close to 500 alumni patients who provide their name and contact information so prospective patients can contact them directly and ask questions. These teams of former patients are not medical professionals offering medical information but are able to share why they chose proton therapy versus other treatment options, why they chose the UF Health Proton Therapy Institute and also share their experience with the level of care received at the Institute. Once a patient signs a release allowing us to share their name, it is included with our packet of materials sent out to inquiring individuals upon their request.
We would like to expand our Ambassador program to include spouses and caregivers. While cancer always impacts the whole family, prostate cancer is considered to be a couple’s disease. The wives who spend multiple weeks in Jacksonville at our Institute alongside their husbands going through treatment become experts in their own right when it comes to what it’s like to be the caregiver and support for their loved one.
If you are a spouse interested in helping other spouses and caregivers as they travel though this journey, please contact Lisa Ward, 904-588-1412 or email@example.com, who can answer your questions and help you get started.
We are extremely grateful for our Ambassadors who eagerly volunteer to speak with prospective patients honestly and from the heart. We know this program has helped hundreds who are working their way through the multitude of decisions they will need to make following the diagnosis of cancer.
Each year everyone, staff and patients alike, gets into the Halloween spirit, and 2019 was no exception. Pediatric patients and their siblings enjoy trick-or-treating in each department. The Institute’s staff and physicians wear costumes to the delight of patients young and old.
On July 16th Medicare released a proposal to change the way they will pay for radiation therapy services. Per Medicare, the intent of this proposal is to improve quality and reduce cost. Unfortunately, as it is currently proposed, it will have the exact opposite effect on proton therapy. Medicare defines its proposal as an experiment. We define it as a poorly designed experiment that unfairly targets proton therapy by reducing our payments by approximately 50%. Proton centers will face a very serious challenge in making ends meet under this new payment scheme. This experiment could very well result in a significant decrease in patient access to protons.
Since opening in 2006 we have faced many challenges but never one as draconian as this. In this issue of Precision we will provide a detailed explanation of Medicare’s proposal, and provide you with the tools necessary to help us fight this proposal. Never before have we asked for your assistance in fighting on our behalf and on behalf of all proton therapy providers. The time is now and we need your help!
Stuart L. Klein
On July 16th Medicare released a Radiation Oncology Alternative Payment Model (RO-APM) proposal that redefines how radiation therapy services are to be reimbursed for a subset of the radiation community. Defined as an experiment, Medicare proposes to implement a mandatory radiation bundled payment rate for 40% of radiation providers.
The UF Health Proton Therapy Institute currently bills Medicare for each individual service provided, i.e., we submit a billing code for each individual treatment a patient receives. We likewise submit a billing code for all of the other services that patients receive along with their treatment, i.e., simulation, visits with your physician, etc. The RO-APM proposal would bundle all of our services under a single billing code. It would include all services provided during treatment as well as any services provided within the 90-day period following a patient’s last treatment. On the surface, this sounds fine, as it will reduce the administrative burden in billing for lots of different services. The problem arises in the amount Medicare is willing to pay for the bundle.
In order to come up with the proposed bundled payment rate, Medicare analyzed hospital radiation oncology claims from 2015 to 2017. Unfortunately, this group of claims included very few proton treatments. Proton therapy accounted for only 0.7% of the total sample analyzed. It is difficult to understand how they could justify including protons in the bundled rate when episodes of proton therapy represented less than 1% of the total.
The proposed bundled payment rate would be the same for any radiation therapy service. Therefore, a provider would receive the same reimbursement whether the provider treats the patient with proton therapy, X-Rays (conventional therapy) or radioactive seed implants (brachytherapy). The impact between current Medicare rates and the proposed bundled rate is as follows:
As previously mentioned, this proposed experiment is to include 40% of all Medicare radiation oncology claims. In order to come up with the 40% sample, Medicare intends to select randomly various defined statistical areas that are comprised of groupings of zip codes. Medicare did not identify these statistical areas in their proposal so providers currently have no idea if they are in or out of the sample. Those selected to be in the sample will be required to participate for the length of the proposed experiment, i.e., five years. Participation in the experiment will therefore be mandatory and will last for five years.
The negative economic impact of the RO-APM proposal cannot be overstated. Proton centers will be placed in financial jeopardy, and many will not likely survive. An additional unforeseen impact of the proposal will be to jeopardize access to proton therapy for pediatric cancer patients. Proton therapy is widely recognized as the gold standard treatment for pediatric cancer patients, and closures will negatively affect future access for our most vulnerable citizens.
In summary, the RO-APM proposal will result in drastic cuts to proton therapy reimbursement. The ultimate result will be to deprive Medicare beneficiaries and other patients from access to proton therapy, a cancer treatment with excellent patient outcomes.
Tell your elected leaders in congress: Protect cancer patients and challenge Medicare’s proposed reimbursement rule for radiation oncology.
The following are basic points you will want to make with your Members of Congress to urge them to take action:
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Presentation at 4Men Prostate Cancer Support Group
Avow, 1095 Whippoorwill Lane, Naples, FL 34105
Active After 50 Expo for Baby Boomers & Seniors – St. Augustine
St. Augustine Outlets’ Indoor Mall, 500 Outlet Mall Blvd, St. Augustine, FL
Prostate Cancer ABCs Patient & Caregiver Conference
The Brownwood Hotel & Spa, 3003 Brownwood Blvd, The Villages, FL 32163
Free Registration Required at https://March21Conf.eventbrite.com
Cancer Resource Navigation Event
UF Health Jacksonville, LRC Building, 655 West 8th Street, Jacksonville, FL
Active After 50 Expo for Baby Boomers & Seniors – Ponte Vedra Beach
Ponte Vedra High School, 460 Davis Park Rd, Ponte Vedra Beach, FL 32081
The Precision Newsletter is an electronic-only publication that is distributed by email. Each issue is sent monthly to patients, alumni patients and friends of the University of Florida Health Proton Therapy Institute. As the official newsletter of the Institute, the content is compiled and prepared by our communications representative and approved by the editor Stuart Klein, executive director of UF Health Proton Therapy Institute. Special bulletin newsletters may occasionally be prepared when timely topics and new developments in proton therapy occur. If you would like to send a Letter to the Editor, please click here.
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