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, 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.”
  2. “Online advertising and marketing claims by providers of proton beam therapy: Are they guideline based?”


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 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:

Golf Tournament Save the Date

The 15th Annual Play Golf. Fight Cancer.® Classic to benefit the proton research program at the UF Health Proton Therapy Institute will take place October 21, 2019 at the World Golf Village, St. Augustine, Florida.

Sponsorships are available with various levels that include foursomes, recognition on promotional materials and signage, and sponsor’s logo displayed on the website, social media and player gift. Call 904-588-1423 to speak to the sponsorship director or email . Foursomes and individual players can register online at

According to Nancy P. Mendenhall, MD, professor and associate chair of UF Health Radiation Oncology and medical director of the UF Health Proton Therapy Institute, the generosity of past participants has made it possible to perform research that is changing the way cancer treatment is handled in the United States and around the world.

“Please, join us for a fun event as we Play Golf. Fight Cancer.® Together, we can help current and future cancer patients from Florida and around the world get the care – and the confidence – they need to live a happier, healthier and longer life,” said Mendenhall.

Executive Director Message

StuartKlein.pngMay is brain tumor awareness month, and the UF Health Proton Therapy Institute is a regional resource with radiation oncologists who specialize in treating brain tumors and other central nervous system tumors. Our pediatric program is well-known worldwide for excellence in treating rare tumors such as craniopharyngioma and ependymoma. Of the pediatric patients we have treated, 65% have had a brain tumor. What makes proton therapy optimal for treating brain tumors? In children, we can reduce the amount of collateral radiation to healthy, growing brain tissue and other critical structures such as the eyes, ears and pituitary gland. This means less risk of cognitive, visual or hearing impairment, and hormone deficiency. These same benefits are seen in adult brain tumor patients as well. And because more targeted radiation doses are given, better tumor control may be achieved. This is the two-fold benefit of proton therapy, excellent tumor control and excellent quality of life outcomes for patients.


Stuart L. Klein

Executive Director

Jacksonville Feels Like Home to Family from Australia


By Theresa Edwards Makrush

When Kalpana Nagraj and Prasanna Venkatesh learned that tumor remnants in their 10-year-old son Arjun’s brain showed signs of growing after 16 months of remission following surgery they were surprised. Arjun was not experiencing any symptoms said his father Prasanna. The change, however, was visible on the imaging scan done as part of regular monitoring of his condition. His doctors in Sydney, Australia, recommended radiation therapy.

Kalpana, Arjun’s mother, said at the time of his initial diagnosis in August 2017, he had recently passed a rigorous academic exam and was placed in one of the top schools for gifted and talented students. Through their discussions with the radiation oncologist in Sydney and their independent research, they were aware of the potential treatment-related risks to cognitive function. “We didn’t want the effects of radiation to affect his future prospects given he is a very bright child,” she said 

Arjun’s parents with strong support from their local radiation oncologist, endocrinologist and general practitioner began researching options, including a Facebook page for parents whose children have been diagnosed and treated for craniopharyngioma – a tumor so rare it is estimated to affect two people in a million. There they got in touch with a family from Australia who had a child treated with proton therapy at the UF Health Proton Therapy Institute. Encouraged by what they learned, they reached out to the experts at the Institute as they wanted Arjun to reach his maximum future potential.

They also looked into other proton therapy centers around the world, there are none in Australia, and were therefore confident in choosing the UF Health Proton Therapy Institute for Arjun’s treatment. “When you look at the medical research about craniopharyngioma, Dr. Danny is one of the world’s best. They are the leader in the field, and UF Proton has had the most success in treating children with craniopharyngioma,” said Prasanna.

They were connected with Amy Sapp, RN, BSN, director of pediatric nursing, and Daniel J. Indelicato, MD, director of the University of Florida pediatric radiotherapy program and associate professor of radiation oncology. “We had interaction with Amy and Dr. Danny before we got here. They sent the information to our doctor to quickly make a decision, and enabled us to process the Medical Treatment Overseas Program, or MTOP, paperwork. Their responsiveness was fantastic,” said Kalpana and Prasanna.

Within two weeks of approval by the MTOP, the family, including six-year-old daughter Avika, made the journey to Jacksonville arriving on March 11. Heather Oakley, LCSW, OSW-C, director of social services and pediatric oncology social worker, helped arrange housing and transportation making the experience easy. “They organized for us to get picked up at the airport. They took us directly to Walmart to shop. We had everything in hand,” Kalpana said. She was delighted to learn about the loan closet at the Institute where she found everything from a tea kettle to an X-box complete with games to entertain the children. “You don’t have to feel like you need to bring everything from home,” said Kalpana.

Prasanna said that because of the support network at the Institute, families should not be afraid of being out of their comfort zone if they need to travel for treatment, especially when you want to give your child the best treatment possible. “If the fear is you have to go to the other side of the world, it’s not daunting because the support network is here.” Kalpana added, “We actually felt like we were at home.”

Arjun has not had any acute side effects while having proton therapy. His neurological evaluation indicates that he is in the top percentile for his age with no loss of cognitive function, his parents said. He has Skyped with his teacher in Australia to keep up with his studies, and is preparing for a national level exam in May. Kalpana said he’s taking good care of himself, making sure to eat healthy foods and to exercise – his favorite is swimming the freestyle stroke and the backstroke – doing everything he can to get well. She said, “He’s an old soul in a young body. He’s a very motivated child with a fighting spirit, and UF Proton and their wonderful, amazing team have ensured Arjun receives the best.”

The family enjoyed participating in the many activities hosted by the social services team at the Institute, including Family Fun Night, support groups and outings to shows and theme parks. Jennifer Duncanson, MS, CCLS, child life specialist, was excellent and supportive and helped organize all tickets. Staying active and connected helped the family keep a sense of normalcy said Prasanna.

Kalpana said the art table in the lobby staffed daily by artist-in-residence Pamela Gardener was especially beneficial. Arjun said, “Everyone is very friendly. Pam entertains me and makes me happy every time I come here.” Kalpana and Avika also enjoyed the art table, and Kalpana said talking with Pam and doing the projects helped her to not be anxious or stressed.

“If you want to feel like you’re at home and get the best holistic treatment for the whole family, come to UF Proton,” said Kalpana.





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 . 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.