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.  

2011 Pediatric Proton Survey Results Announced

National Association for Proton Therapy and Pediatric Proton Foundation 2011 Survey Reveals 32% Increase in Pediatric Cases Treated at U.S. Proton Centers

Brain cancer continues to be the main tumor target for proton therapy - an advanced form of radiation treatment according to the National Association for Proton Therapy and the Pediatric Proton Foundation.

Click here for 2011 Pediatric Proton Survey Results

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

Child-Sizing Radiation Doses From Medical Scans - ABC News

Child-Sizing Radiation Doses From Medical Scans - ABC News

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.