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.
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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!
