ASTRO'S New Model Policy Supports Proton Therapy for Pediatrics

The American Society for Radiation Oncology (ASTRO) has issued a new Model Policy for proton beam therapy (PBT) that details which cancer diagnoses meets ASTRO's evidence-based standards and should be covered by private insurers and Medicare.  Developed by leading radiation oncologists and medical physicists, including significant input from expert representatives in proton therapy, this Model Policy supports PBT coverage for appropriate patients and identifies areas where coverage with evidence development and further research are needed.  

PBT's reduced radiation dose to healthy tissues is attractive because it can reduce side effects for patients, which potentially increases their quality of life. To date, scientific evidence exists confirming that PBT is particularly useful in a number of pediatric cancers, particularly those in the brain, as well as for certain adult cancers such as ocular melanoma.

In identifying and describing appropriate use of proton-beam therapy, the policy lists four circumstances when use of the technology is reasonable (and most pediatric cases would then qualify):

1.      Target volume is close to a critical structure, requiring a steep dose gradient outside the target to limit the structure's exposure.

2.      A decrease in dose inhomogeneity in a large treatment volume is required to avoid an excessive "hotspot" within the target volume.

3.      Use of photon-based therapy carries an increased risk of clinically meaningful normal-tissue toxicity.

4.      The same area or an adjacent area has been previously irradiated, increasing the need for sculpting to limit the cumulative radiation dose.

 

Ama(yo)zing Mayo Clinic Visit

I was honored to be asked to speak at Mayo Clinic last week regarding pediatric proton therapy and the obstacles parents face.  It was hard not to be impressed upon arrival to Rochester as Mayo Clinic and its affiliates seem to occupy most of the downtown.  With some 35,000 employees the town is a hustle and bustle of medical professionals and patients.  The underground Subway system that is not a mechanical subway, but rather a collection of underground walkways, restaurants and shops allows you to go from most downtown hotels to the clinic without ever going outside or needing a car.  When I walked around town, there were numerous restaurants and activities within close distance of the clinic.   I saw people from all over the world and I thought how lucky are we to have great medical care right here in Rochester, Minnesota.   Being a huge Steelers fan, I tried to ignore the town’s obsession with the Vikings – though a good rivalry.

I commend Mayo proton for preparing to treat pediatrics and having the guts to hear from a person like me how hard work it is.  So with the latest in technology, we were able to broadcast my slides and myself all the way to Phoenix and other parts of the center.  My main message included parents (many nontraditional) being high maintenance and the cancer children coming with siblings, grandparents and a lot of other challenges.   I spoke a lot about insurance challenges and what a disaster it is that insurers often hinder a child from receiving proton therapy.  

I then got to tour the new proton center!  There was a lot of excitement because the beam was going live that day.  I loved the design, very bright and crisp, with keeping in mind workflow and efficiency with anesthesia prep and recovery.   All my hosts listened with open ears as I commented from my standpoint.   I just know parents and the kids are loungers and take more space then really necessary (maybe there is something about controlling the corner of a waiting room.)  I wished my best idea wasn’t a new slushie machine, though I can’t imagine anything more fun for a kid coming out of anesthesia or for that matter a grumpy adult.  I had a chance to talk to many different groups that will be caring for the children and all had a focus on how their area could make the experience positive and fun for the kids.  I left that day thinking this is going to be a truly great center keeping with the high expectations one expects from Mayo clinic.  Besides having some of the top pediatric experts in the world – they have people that care enough to ask and listen.  Special thanks to Becky and Shari for making my trip a wonderful and memorable experience!

 

Proton Mom Dot Com is Born!

I was so fortunate to be able to serve as the moderator of the Pediatric Proton Panel on Tuesday, February 12th at the National Association for Proton Therapy's first annual conference in Washington, D.C. Thank you Len Artz for inviting me to be a moderator at your very first conference! My pediatric panel was outstanding and included:

Dr. Daniel Indelicato, University of Florida Proton Therapy Institute
Dr. Anita Mahajan, M.D. Anderson Cancer Center Proton Center
Dr. Andrew Chang, Hampton University Proton Therapy Institute
Dr. Kevin McMullen, Indiana University Health Proton Therapy Center

I can't even begin to describe the variety of information we discussed in our hour long session and as soon as the video is ready I will post it here.  There was a lot of great information shared among our professionals and again as I said in the beginning, "a dream come true for this Mom."  

From all this a new name has emerged, Proton Mom, and that is after another inspiring encounter with Proton Bob.  Bob was at the conference also and his group recently completed a comprehensive survey from prostate patients who had undergone proton therapy for their treatment.  Over 99% stated they would recommend it to others.

 

I met Mike Hyman, Kids-N-Cancer, from the U.K. in person for the first time - we have had conversations on the phone, but not the same. I love Mike for he is dedicated, heart and soul, to helping the children of the U.K. financially when they come to the U.S. for proton therapy. His dedication was palpable.  I was inspired that his sentiments were basically that a parent should never have to bury a child as long as friends and neighbors were willing to pitch in and save a life. We both vowed we could work together in the future.

To my cousin Chuck, who passed away unexpectedly last week - peace and love.

Dr. Kevin McMullen Appointed to the Pediatric Proton Foundation's Board of Directors

The Pediatric Proton Foundation today announced that Dr. Kevin McMullen was appointed to the Board of Directors effective January 2, 2013. This appointment will bring the total number of board members to eight until the Foundation’s next Annual Meeting to be held in conjunction with the National Association for Proton Therapy’s Inaugural Annual Conference, “Impacting Cancer Outcomes through Proton Therapy” in Washington D.C. February 11-14, 2013.

Dr. McMullen is currently medical director of radiation oncology for Indiana University Health Hospital in Indianapolis, Indiana and a radiation oncologist at Indiana University Health Proton Therapy Center in Bloomington, Ind. Dr. McMullen is an associate professor of radiation oncology at the Indiana University School of Medicine, where he also holds the Indiana Lions Endowed Scholar in Cancer Survivorship. He also serves on two late effects task forces within the Children’s Oncology Group.

He completed his residency at Wake Forest University School of Medicine, with further residency and post-residency pediatric radiation oncology training at St Jude Children’s Research Hospital and Memorial Sloan-Kettering Cancer Center. Dr. McMullen served his country in the U.S. Army in progressively increasing levels of medical leadership including being a Brigade Flight Surgeon for the Aviation Brigade of the First Cavalry Division headquartered in Fort Hood, Texas.

“The addition of Dr. McMullen will further enhance the outstanding talents and wide-ranging experience that our Board of Directors brings to the Pediatric Proton Foundation,” said Susan Ralston, Executive Director. “Dr. McMullen is widely respected and deeply experienced in pediatric cancer treatment through his past experience at Wake Forest and in his current positions at the IU Health Proton Therapy and with Riley Hospital for Children at IU Health.

Dr. McMullen is determined to continue to contribute to pediatric proton therapy advancements stating, “Because of my research in survivorship issues and prevention of late effects of cancer therapy, I believe I can offer insight as we further develop the scientific basis for appropriate use of this technology for cancer stricken children – one of IU Health Proton Therapy Center’s main focus and that of the Pediatric Proton Foundation. I am proud to volunteer my time for such a worthy organization.”

Click Here for Full Press Release

Pediatric Proton Foundation Objects to 55% Reduction in OPPS Payment Rates for Level II Proton Beam Radiation Therapy

In keeping with its mission of providing advocacy for pediatric cancer patients seeking proton therapy, the foundation filed a written comment letter to the Department of Health and Human Services regarding serious concerns about the planned reduction in OPPS payment rates for Level II Proton Beam Radiation Therapy. PPF went on to explain that..." 75% of young patients treated with proton therapy had brain tumors. More than half of those children treated were under nine years old. To reduce the proton center's ability to recover their cost when treating children, the most vulnerable population who is least able to articulate their concerns, will mean that less valuable treatment slots are being used for our children."

Pediatric Proton Panel Set to Meet Feb. 12th in Washington, D.C.

The National Association for Proton Therapy is set to hold its first annual conference in Washington, D.C. from Feb. 11, 2013 -Feb. 14, 2013.  On February 12th, there will be a panel of Pediatric Radiation Oncology experts including Dr. Indelicato (U Florida PTI), Dr. Chang (Hampton UPTI), Dr. Mahajan (MD Anderson PTC) and Dr. McMullen (Indiana HPTC) discussing pediatric proton therapy.  The panel will discuss pediatric proton treatment protocols, trends and future treatment implications.  

Treating Brain Tumors in Children

FROM THE HEALTH GUIDE:

Of all the different kinds of solid tumors that a child might get, the brain tumor is the most common one. What causes brain tumors in children?

As with any other kind of tumor, a brain tumor comes about when a cell somehow gets out of control and multiplies uncontrollably. For the most part, science doesn’t yet have an answer to what causes brain tumors in children exactly. But scientists do suspect genetic reasons and environmental influences.

When a pediatrician suspects a brain tumor in a child, the first thing he does is to order an MRI or CT scan. A child needs be very still for any one of these scanning devices to work properly. Most of the time, with very young children, the doctor sedates the child so that she’ll stay still enough. Sometimes, if the results of the scan don’t seem conclusive enough enough, they’ll even try to do a biopsy – where they actually take out material from the brain.

It can take a whole team of specialists to successfully treat brain tumors in children. Most of the time, a child who is affected in this way will need surgery, chemotherapy and even radiation therapy. Treatment techniques have improved considerably now. Most of the time, the child will come out in one piece.

But it can be a very complicated process treating brain tumors in children. Typically, the team of doctors treating the child will include a neurosurgeon, a neurologist, a pediatric radiation therapist, a neuro-oncologist who specializes in children and so on.

Medical science is now clear about how brain tumors in children should be treated – it should be treated aggressively. And so, pediatric neurosurgeons are usually able to produce better outcomes – now that they know what exactly they need to do. The fact that there is all this high-tech equipment that they have at their disposal, helps too.

These days, they usually conduct pediatric brain tumor surgery in stages. They don’t go in and remove the tumor all at once. They do it a little bit at a time, over several operations. When they do it this way, they are able to make use of intervening periods to apply radiation therapy to the tumor so that it will shrink. The doctors hope that when they do this, they can be as non-invasive is possible. The third new techniques coming online all the time.

Instead of using radiation traditional radiation, the doctors use something called proton beam therapy.

In the future, all brain tumors in children will be treated this way. Proton beam radiation is a far more precise a way of going about it. There is no collateral damage to tissue that’s close to the tumor.

www.thehealthguide.org/tumors/treating-brain-tumors-in-children/

Pediatric Proton Foundation Founder Visits the IU Health Proton Therapy Center - IU Health Proton Therapy

Pediatric Proton Foundation Founder Visits the IU Health Proton Therapy Center - IU Health Proton Therapy

Neuropsychological Testing and Pediatric Proton Therapy

I am a lucky person in serving in my role as the Executive Director of the Pediatric Proton Foundation because I get to interact with health care professionals and convey to you what’s on their minds.  Recently, I visited Philadelphia and Indiana and sat with the Neuropsychological teams at both centers.  Here is what I learned that you need to know:

1.  If your child has been diagnosed with cancer and is well enough, you should get a complete neuropsychological test to establish a baseline as soon as possible.  Neuropsychological testing involves giving a child a number of tests that provide information about how the brain works in the areas of memory, speed, language, visual processing, auditory processing, integration of information, emotional and behavioral regulation, and planning and organization.  The tests are age appropriate. These tests are administered by a trained professional usually a licensed psychologist and should be done by your doctor, not your school.

2.  The typical neuropsychological problems exhibited by childhood-cancer survivors involve processing speed, memory, working memory, organizational skills, time management skills, math skills, and social skills. These deficits have clear implications for success in the educational environment.

3.  All cancer treatments including chemotherapy and proton therapy can cause late effects to include cognitive deficits.  This is still a very new area in terms of understanding what specific chemo drugs cause problems because most chemo protocols are a mixture of various drugs.  However, it is well-documented regarding the late effects of radiation to the brain and spinal cord and other organs.

4.  Knowing the late effects will not probably not change the protocol that you need to follow for your child; however, testing helps establish what effects may be associated with cancer treatment as compared to other normal causes.

5.  Many late effects take years to really show in academics because earlier studies are easier to process as compared to more difficult tasks later in middle school and high school.

6.  Recommendations from the neuropsychological examination may include specific professional interventions that can be incorporated into a child’s Individualized Education Program (IEP).

7.  All the professionals I met with recommended annual testing.  Many insurers will only pay for it every three years.  Read your healthcare handbook and know your rights.

Pediatric Proton Responds To Bloomberg Article

http://www.bloomberg.com/news/2012-03-26/prostate-cancer-therapy-too-good-to-be-true-explodes-health-cost.html

Pediatric Proton Response:

One thing I find common in articles such as this that bash proton therapy for prostate cancer is that the author agrees there is consensus regarding proton therapy for many pediatric cancer cases. There is consensus because you can see from any comparative pediatric treatment plan protons are pinpoint targeted, provide no exit dose to surrounding healthy areas and this results in better outcomes for children still growing and developing. There are also studies that show reduced risk of secondary malignancy for children when protons are used.  Yet in 2010 only 465 pediatric cases were treated in the U.S. partly because of access issues to protons with only 10 operating centers.  With the likes of Mayo Clinic and St Jude Children’s Research Hospital in process of building proton centers, it will be a true milestone for our children when protons become the standard of care for all pediatric cancer cases

IU Health Proton Therapy Center Brings Protons to More Children

Bloomington, IN –The Indiana University Health Proton Therapy Center in Bloomington, Ind., becomes the first proton center in the country to simultaneously treat children under anesthesia in two treatment rooms. Previously, the IU Health Proton Therapy Center could treat one anesthesia case at a time. The increase in the Center's ability to treat additional anesthesia cases makes it possible to deliver this treatment to more children with cancers/tumors of the head, neck, and spine.

The efforts to increase the anesthesia cases would not be possible without the partnership with Riley Hospital for Children at IU Health. "It is unique when world-class organizations work together as we do with Riley Hospital," says Dr. Peter Johnstone, president and chief executive officer of the IU Health Proton Therapy Center and chair and William A. Mitchell professor of radiation oncology for the IU School of Medicine. "Together, we provide an extraordinary resource for the most vulnerable patients: children with cancer." When treating young children with the precision of protons, it is critical that they are immobilized for their treatments and anesthesia is necessary to achieve this level of accuracy. Locally, the anesthesia efforts are provided by Bloomington Anesthesiologists, who are specially trained to work with children. Johnstone adds, "Without their expertise in pediatric anesthesia while under treatment, this work would not be possible."

The IU Health Proton Therapy Center provides treatment for patients of all ages; however, children are at the heart of the practice and accounted for 30 percent of the patient population in 2011. Since opening its doors in February 2004, one in every 12 patients has been treated under anesthesia and that number is anticipated to grow in 2012.

Pediatric Proton Responds to New York Times Opinionator Article

There was an article published in the New York Times yesterday.  You can read it here:

http://opinionator.blogs.nytimes.com/2012/01/02/it-costs-more-but-is-it-worth-more/

The Pediatric Proton Foundation responded as follows:

As the mother of a child that survived paralyzing spinal cancer at the age of 2 in part due to proton therapy, I feel compelled to respond to this article. As you indicate in your article, there is mounting evidence that protons will become the standard of care for cancer treatment for pediatric patients, especially when it comes to brain and spinal tumors. The problem for most parents is accessing proton therapy for their cancer-stricken child. With only 9 centers in the U.S., it often involves a temporary move for the family during the proton treatment which is often cost prohibitive (we traveled over 1,500 miles.)  Sadly, only 465 children received proton therapy in the U.S. in 2010, and as you indicate over 3,500 could have benefited. To solve this problem, we need to have more access for our children through more proton centers. I congratulate Mayo for making this important investment on behalf of all pediatric cancer patients, and I thank you on behalf of my son, now age 6, NED and healthy.

Pediatric Proton Foundation Supports ASTRO's Annual Meeting

The Pediatric Proton Foundation (PPF) was in full force at the Annual Meeting of ASTRO in Miami Beach, from Oct. 1-5, 2011.  Volunteers, Susan Ralston, Executive Director, and Ann-Marie Lewis visited from the headquarters area in Virginia Beach and participated in numerous key meetings with old friends and many new friends.  Susan Ralston states, "the proton community is a small world, indeed, and there are so many great people involved in the science and application, it is inspiring to see collaberation and fellowship in action."  The Pediatric Proton Foundation recently partnered with the National Association for Proton Therapy to release survey results from pediatric patients treated with protons in 2010.  The study is available here.

The Annual Meeting of the PPF was held at the Miami Beach Convention Center on Oct. 3, 2011 in attendance included founders, Dr. Sameer Keole, ProCure - Oklahoma City and Dr. Cynthia Keppel, Hampton University Proton Therapy Center.  Other top notch professional volunteers include proton therapy consultant Dr. Andrew Chang and Dr. Daniel Indelicato of the University of Florida Proton Therapy Center.  Dr. Vivian Porche, from MD Anderson, was unable to attend this year.  New applicants for the board were considered (stay tuned) and other important topics were discussed to include the 2011 Pediatric Proton Therapy Survey. 

Many thanks to the supporters of our foundation.  We are reminded daily about those special children and their parents who are fighting cancer today and every day.  Our mission is clear - we want to see every child that qualifies for proton therapy to get it because it reduces the radiation long term effects to healthy surrounding organs and tissues.  We support more proton centers to be able to serve the need.  We support proton therapy as the standard of care for appropriate cases of pediatric radiation cancer treatment.

Pediatric Proton Foundation to Hold Annual Meeting at ASTRO

The Annual Meeting of the Pediatric Proton Foundation will be held at ASTRO in South Miami Beach the first week of October.  Wow!  As we look back on the year, we have so many accomplishments to be proud of given our limited size.  For the first time we published a survey in conjunction with the National Association for Proton Therapy entitled, "Pediatric Proton Therapy in the United States: Patterns of Care 2010."  We were impressed with the findings which revealed 45 diseases were treated in 2010.  Children under 8 being the majority of those pediatrics treated.  We will be reporting these and other findings during our meetings and fellowship during ASTRO.  Stay tuned!

 Thank you for your continued interest in pediatric proton. 

Pediatric Proton Featured in Electronic Sarcoma Newsletter in August!

The Pediatric Proton Foundation is featured in this month's Electronic Sarcoma Update Newsletter (ESUN).  Since my son is a Ewing's Sarcoma survivor, the work of the Liddy Shriver Sarcoma Foundation has been of extreme interest to me since Day 1 of diagnosis.  Click here to read the article:  http://sarcomahelp.org/newsletter/community.html

ESUN is an online, open access, peer-reviewed, bi-monthly newsletter. In addition to feature articles that focus on specific sarcomas and current research and clinical issues dealing with these cancers, it has regular columns that abstract newly announced clinical trials and recent research findings). It also contains a column telling stories of courage and hope, a column that deals with a potpourri of topics of general interest, and updates on sarcoma advocacy and related groups. Our readership consists of physicians (oncologists and non-oncologists), nurses, patients, caregivers and survivors. ESUN contents are accessed over 30,000 times each month, giving wide visibility to the published articles. Additionally, a number of articles in ESUN have been translated by sarcoma physicians and researchers and appear in Chinese, French, Italian, Polish and Spanish to benefit the sarcoma communities within the respective countries.


Thank you Bruce Shriver for your dedicated and excellent work in the Sarcoma community.  Thank you for this opportunity to discuss the Pediatric Proton Foundation!

Meet Executive Director, Susan Ralston, Pediatric Proton Foundation

Pediatric Proton Foundation Supports St. Jude Children's Proton Initiative

The Pediatric Proton Foundation was proud to be recently asked to provide a letter of support for St. Jude Children's Cancer Hospital as it makes a bid to build its own proton center. As many followers will know, St. Jude's announced an alliance with Univeristy of Florida Proton Center in the fall of 2009 to begin sending children suffering from brain tumors for proton treatment to Florida.


Before beginning construction, St. Jude Children's is required to obtain a certificate of need from the Tennessee Health Services and Development Agency.  This is where the Pediatric Proton Foundation came in to help by providing a letter of support. The hearing for this project is scheduled to occur in late August. If the project is approved, construction is expected to begin in spring 2012 and will hopefully begin treating pediatric patients by 2016.

In the Pediatric Proton's letter, emphasis was of course placed on children receiving protons.

"In a recent study conducted by the Pediatric Proton Foundation and the National Association for Proton Therapy, it was determined in 2010, less than 500 children received proton therapy treatment in the U.S. It is estimated that annually over 3,000 newly diagnosed pediatric cancer patients could potentially benefit from protons. St. Jude’s new proton center can help fill the need. By St. Jude’s adopting proton therapy it will help protons to become more widely known and accepted in pediatric cancer treatment."

We wish St. Jude's the best.

Pediatric Proton Foundation Active in Advocacy

The Pediatric Proton Foundation has been busy on Capital Hill. On May 9th, Executive Director, Susan Ralston, participated in a "Proton Therapy Briefing" with key legislators from both the Senate and Congress in Washington, D.C. Susan's role was telling her son's story and detailing the obstables parents face trying to have proton therapy covered through their insurance. Some of the highlights include:

*Denial is common for advanced treament usually due to "experimental/investigative/unproven treatment" The Pediatric Proton Foundation does not support traditional clinical trials in the case for protons as it relates to appropriate pediatric cases. Most pediatric radiation oncology experts agree that protons have a far superior treatment plan for children since protons have no exit dose, and less radiation is needed to get to the targeted tumor. No one needs extra radiation, but certainly not growing and still developing children!

* Appeals can take up to 180 business days, yet most pediatric protocols call for radiation in the early phase of the overall treatment plan.

*Insurers threaten,"if you decide to receive this service, you can be financially responsible for the total cost." A parent's inability to pay for medical treatment for their child is a top reason cited for financial bankruptcy in American cancer families.
_______________________

The Pediatric Proton Foundation is currently working on a first on a kind effort with the National Association for Proton Therapy to collect data from the Proton centers to help transparently report on the "The State of Pediatric Proton in 2010." We are excited to provide this collaberative effort and know this data will go far in helping more kids get to protons in the future. We almost have 100% participation from all the centers once again proving that when it comes to the kids, we all have heart. Thank you proton centers!

Congratulations to Dr. Keppel from the Pediatric Proton Foundation

The Pediatric Proton Foundation would like to congratulate Dr. Cynthia Keppel on her selection as the 2011 Virginia Outstanding Scientist! Dr. Keppel serves as a board member with our foundation, and she makes us proud!

Read more here: http://www.hamptonu.edu/news/012611_40_keppel.html

Editorial: Hope in Hampton - dailypress.com

Editorial: Hope in Hampton - dailypress.com

Thank you Hampton University for the opportunity to tell our story and advocate for pediatric proton therapy. Wow, it seems we made a difference! Thanks to Carol too for writing this editorial.