This is a great Site for information on Protons and everything related to it, including insurance help, which seems to be an issue for prostate cancer patients. Hopefully the things Bob mentions in his newsletter will help get that changed. We thank him for his help and resources he shares with us all. It is an excellent resource for all Proton Patients and those researching Proton therapy.
Brotherhood of the Balloon - March Newsletter
Insurance coverage for proton therapy is probably the single biggest challenge we have faced in recent years. Science, logic, and the laws of physics tell us that proton therapy is superior to X-rays for treating prostate cancer because significantly less radiation is deposited on healthy tissue. One would expect fewer side effects as a result, as well as a much lower risk of secondary cancers later in life. Certainly this is the widespread belief when treating cancers in pediatric patients. Recent studies comparing proton to IMRT in treating patients with head and neck sarcomas, as well as esophageal cancer, show clear benefits with proton, particularly with regard to quality of life issues. We report on one of these studies in this month’s BOB Tales and another in next month’s issue.
Nevertheless, a large and growing number of private insurers are denying coverage for proton therapy for treating prostate cancer. The reason? Because there haven’t been prospective clinical studies to prove conclusively that proton is superior and to justify the higher treatment cost.
A solution to this problem may be on the horizon. We have mentioned in previous newsletters that after two failed attempts, a project team led by Dr. Nancy Mendenhall, medical director at University of Florida Health Proton Therapy Institute, has won funding approval by the Patient-Centered Outcomes Research Institute to conduct a study comparing proton therapy to IMRT for treating prostate cancer. PCORI is a government-sponsored organization charged with investigating the relative effectiveness of various medical treatments.
Deb and I are privileged to be part of the project team along with clinical representatives from every proton center in the country as well as research, administrative, and vendor representatives. Representatives from several IMRT treatment centers in the U.S. are also members of the PCORI project team.
My role on the project team is as a patient stakeholder. I am also honored to serve on the executive board. Deb’s role on the team is as a patient caregiver.
We consider this project to be one of the most important things happening in the proton world. Over the weekend of February 2-4, Deb and I attended the kick-off workshop in Amelia Island, Florida where there were 72 people in attendance representing virtually all the proton centers in the U.S. as well as several IMRT centers.
Since negotiations with PCORI have not been completed and Institutional Review Board approvals are not in place, we cannot discuss details of the project. As soon as we are allowed, we will share with you information about the size, scope, and other details of this comprehensive landmark study. We will also let you know about the key role you, our membership, can play in helping to ensure the success of this project.
There is another important study underway, which was reported at our workshop; we can talk about this one. It’s another trial comparing proton therapy to IMRT in treating prostate cancer. We are covering the PARTIQoL Trial as our lead story in this month’s BOB Tales. I’m sure this subject will interest our readers.
We have another full and informative newsletter this month. As always, we welcome and encourage your feedback and suggestions. Just send us an email.
To print the BOB Tales newsletter or view the newsletter click on the link below.
NATIONAL ASSOCIATION FOR PROTON THERAPY CONFERENCE 2018 - March 25 - 28, 2018:
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