Patient Art Gallery Named in Honor of Karen L Cranford

Dr. Mendenhall and Karen L Cranford
Dr. Mendenhall and Karen L Cranford

“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.

For information about the Karen L Cranford Art Gallery or the Endowment, please contact Kathy Murray at kmurray@floridaproton.org or 904-588-1519.


*Please note: Karen L Cranford did not put a period (.) after the initial L in her name.

 

Supporters Gather to Play Golf. Fight Cancer.®

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.

Winning teams for this year’s tournament were:

1st Place: – Jeff Goolsby, Jeremy McDonald, Madison Swartz, Brad Robbert

1st place winners

2nd Place – Joey Bachelor, Sung Li, Dave Spradlin, Trevor Fleming

2nd place winners

3rd Place: Jeff Toadvine, Ben Hankinson, Tom Hankinson, Steve Amos

3rd Place winners

 

Our heartfelt thanks to all who participated whether as a sponsor or player or both. We’re glad you joined us to Play Golf. Fight Cancer.®

 

A Relaxing Option to Help Relieve Joint Pain - Yoga Therapy

“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.

“For me, it’s about relaxation and being pain-free,” said Rozina. “On Monday at the end of work I’m usually pretty tense. But I go to yoga and relax. I feel the benefits immediately. My joint pain goes away!”

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:

  • Patients at 3 PM
  • Staff at 4 PM
  • Staff at 5 PM

If you have questions about yoga or any other activity for patients, their families or staff, please call Brad Robbert, Director of Operations, at 904-588-1251.

Ambassador Program

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 lward@floridaproton.org, 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.

Treats and Costumes Mean Halloween Fun

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.

Halloween Costume Winners

 

Executive Director Message

StuartKlein.pngOn 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

Executive Director

Medicare’s RO-APM Proposal

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:

Impact between current Medicare rates and proposed bundle rate

Proton therapy would receive approximately a 50% cut in reimbursement under this bundled rate proposal.

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.

Here’s How You Can Help

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:

  • Medicare is proposing to change the way it reimburses radiation oncology services.
  • The proposed rule is called the Radiation Oncology Alternative Payment Model, or RO Model.
  • The proposed rule, as written, is bad for cancer patients.
  • The proposed RO Model is bad for cancer patients because it would significantly decrease access to proton therapy, a type of life-saving radiation treatment that is proven to reduce excess radiation to healthy tissue and, therefore, reduce serious side effects.
  • CMS (Centers for Medicare & Medicaid Services) should revise the proposed RO Model and exclude proton therapy from participation.
  • Time is running out. The public comment period ends in a few weeks and the rule is slated to go into effect in January 2020. 
  • You have the power to stop a serious mistake in CMS reimbursement rules that will cost lives. 
Download Templates

Download a letter template that you can customize with your personal experience. There is also a suggested script should you prefer to call your representative or senator directly, as well as a post for social media.

 

Executive Director Message

StuartKlein.pngThe 2019 meeting of the American Society of Clinical Oncologists included at least two research presentations about proton therapy that deserve a closer look.

First, a study1 from the University of Pennsylvania and Washington University in St. Louis that suggests a significant reduction in side effects for patients treated with proton therapy versus photon therapy, also known as X-ray therapy. Researchers analyzed the data from 1,483 adult non-metastatic cancer patients with various types of cancer who received a combination of chemotherapy and radiation therapy. Of the patients who received proton therapy, 11.5% had a side effect that required hospitalization within 90 days of treatment, while 27.6% of photon patients were hospitalized. Disease-free survival and overall survival rates were similar for both groups. This is more evidence that proton therapy is a highly effective cancer treatment that provides patients an excellent quality of life compared to conventional radiation.

Second, a study2 from the University of Western Ontario, London, Canada, that assessed online advertising and marketing claims made by proton centers. The researchers questioned whether centers’ claims were consistent with international consensus guidelines for usage of proton therapy to treat cancer. They found that 58% of proton center websites did not cite references for claims being made. The UF Health Proton Therapy Institute is at the forefront of clinical research and discovery as part of an academic health center. Sharing credible, accurate, reliable information with patients and those recently diagnosed with cancer is of utmost importance. It is why we include medical journal article references on our website. We are committed to treating patients who can most benefit from proton therapy. Through high-quality clinical trials we rigorously document patient outcomes, including for cancers that may not be included currently in international guidelines for proton therapy. This is how medicine moves forward. We must ask the questions, design the studies, perform the research, document and report outcomes to understand the full potential of proton therapy in cancer care.

  1. “Comparative effectiveness of proton therapy versus photon therapy as part of concurrent chemoradiotherapy for locally advanced cancer.” https://abstracts.asco.org/239/AbstView_239_267523.html
  2. “Online advertising and marketing claims by providers of proton beam therapy: Are they guideline based?” https://abstracts.asco.org/239/AbstView_239_252491.html

 

Stuart L. Klein

Executive Director

COMPPARE Study Is Activated

The national clinical trial to compare prostate cancer patient outcomes following proton therapy or photon (X-ray) therapy is underway. According to COMPPARE and Proton project manager Adrienne Greenewalt, the first five sites participating in the study are activated and accruing patients.

The clinical trial is known as COMPPARE which stands for “A Prospective COMparative Study of Outcomes with Proton and Photon RAdiation in PRostate CancEr (COMPPARE).” This study is funded by the Patient-Centered Outcomes Research Institute (PCORI) and led by Nancy P. Mendenhall, MD, at the University of Florida. COMPPARE will ask 3,000 prostate cancer patients (ages 30-80) across the United States who have chosen to be treated with proton therapy or photon therapy to answer brief surveys regarding treatment choice, quality of life, and side effects for at least three years.

In addition, proton therapy patients can choose to participate in a randomized trial in which half will be randomly assigned to the standard course of therapy and the other half will receive a shorter “hypofractionated” course in which the total dose of radiation will be divided into larger doses with fewer treatments. This additional study will evaluate whether quality of life, side effects, and cure rates differ between patients receiving standard therapy versus shorter therapy.

The goal of the study is to answer the following patient-centered questions:

  1. How likely are men to experience different quality of life issues with protons versus photons?
  2. How likely are men to experience different side effects with either treatment?
  3. Which treatment will result in a better cure rate?
  4. Is a shorter, higher dose treatment regimen as safe and effective as a longer, lower dose treatment regimen?

Because men of African descent are 1.6 times more likely to be diagnosed with prostate cancer and more than twice as likely to die from it, the study team is actively working to recruit Black men to this study and assess whether quality of life, side effects and cancer recurrence outcomes differ for these patients.

Participants in the study over the first three years will receive up to $250 for completing surveys before radiation begins, during treatment, and at follow-up visits. For more information about the study, visit www.comppare.org. Research reported in this study website was funded through a Patient-Centered Outcomes Research Institute (PCORI) Award (PCS-2017C1-0422). The views, statements, and opinions presented in this study website are solely the responsibility of the author(s) and do not necessarily represent the views of the Patient-Centered Outcomes Research Institute (PCORI), its Board of Governors or Methodology Committee.

Favorable Outcomes For Prostate Cancer Patients

By Adam Holtzman, MD

Many men are interested in sexual health following treatment for prostate cancer. In the largest known published analysis of patient-reported sexual health outcomes of potent men at baseline treated with external beam radiotherapy, we reviewed outcomes of men treated at the UF Health Proton Therapy Institute.1 All patients underwent high-dose, image-guided proton radiotherapy for the treatment of prostate cancer. Sexual function of potent men was almost 70% at 2 years and 61% at 5 years following treatment. This compares very favorably to other reported outcomes and treatment modalities even when factoring for baseline age and comorbidities.  We also identified a highly favorable cohort: 80% men treated with high-dose image-guided proton radiotherapy who report “very good” function at baseline retained potency at 5 years.

  1. Adam L. Holtzman, Curtis B. Bryant, Nancy P. Mendenhall, William M. Mendenhall, R. Charles Nichols, Randal H. Henderson, Nicholas Figura, Christopher G. Morris, Christopher R. Williams, Zuofeng Li, Bradford S. Hoppe. “Patient-Reported Sexual Survivorship Following High-Dose Image-Guided Proton Therapy for Prostate Cancer.” Radiotherapy and Oncology 134 (2019): 204-210. DOI: https://doi.org/10.1016/j.radonc.2019.01.029

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About This Newsletter

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.

 

Keep In Touch

It is easy to stay in touch with us online at floridaproton.org . Look at the top right corner of the homepage for Facebook , Twitter and YouTube icons, click and join us in the social media conversation. Also on the right side of the homepage there is a button for VTOC Patient Portal . Click here to open your secure account, view your records, complete clinical trial questionnaires and communicate with your nurse case manager.

 

Knowing how you are feeling during and after treatment is essential to providing you the best care possible and contributes to the care of future patients.