I know many of you have been asking for an update on where we stand with what method of radiation treatment Aetna (our insurance) will cover.
Every member of my esteemed and world respected medical team supports and believes that I am an ideal candidate for Proton Therapy rather than traditional Radiation Therapy in order to treat my Glioma Brain Cancer recurrence.
- Our initial request for Proton Therapy coverage was denied (we received notification Saturday).
- Peer to Peer Dr. review between Aetna and Dr. Shu at Winship resulted in a denial as well. This came as a shock to Dr. Shu, my radiation oncologist.
- We are currently in the last phase (Patient Appeal). An appeal is being written up on my behalf with supporting data, expert analysis and clinical supporting data and medical recommendations that Proton Therapy would be the best course of treatment for me in addition to oral Chemotherapy.
We have a simple ask for you:
We have been told that if we know anyone who can reach out to decision makers within Aetna they could provide supportive testimony on my behalf that Proton Therapy should be covered and made available as part of my cancer treatment plan, we should seek those contacts out.
So, here we are.
I honestly cannot believe that I am having to beg for people to help me advocate for what is in my best interest in treating my cancer. If you can help. we would be most grateful.
Full name: Jennifer Keenan Giliberto
D.O.B: 10.10.74
Treatment Center: Winship Cancer Institute (Proton Center)
GREY MATTER LIFE 
I have a skull base tumor that I had surgery on followed by proton beam at MD Anderson. I only finished proton therapy in March but I am so incredibly pleased with how smoothly it went. I had next to no side effects while undergoing treatment and was able to go about my daily activities as normal which says a lot since I had an almost 2 yr old and a 6 month old. The proton therapy center had to fight it but eventually got coverage through my insurance BCBS of SC. So far there has been no tumor growth and the doctors are happy with results. It was incredibly valuable getting proton therapy since the location of my tumor was surrounded by such vital parts. I’d also suggest looking for Facebook groups to find others in your situation. For me, I found a skull base chondrosarcoma group and the people there have had similar experiences to mine so it’s been great for the support and compassion there. A recent post on there just asked how long people had proton beam and how it was going. There are people who had proton beam over 10 years ago and have still seen no growth so that’s been great to hear!!! I hope this helps. Please feel free to reach out to me if you have any further questions.
Jennifer, I have reached out to the business development specialists at Provision CARES Cancer Center here in Knoxville.
The center provides proton therapy.
She will FU and get back with me tomorrow.
Jeannie
Jenn
Have you reached out to Dane Peterson CEO at Emory. I believe you know him . Do you know him?
Peter Nicholas
President TIGHITCO
Sent from my iPad
I do know Dane… if you feel comfortable reaching out in our behalf, we’d be grateful. It’s been a number of years since Dane and I spoke. Here are some important taking points: Here are some important points to tweet/ email to Aetna CEO @mtbert and @aetna #protontherapy #protonradiation #aetna #caredenied #braincancer #advocacy
1. There is less toxicity to the surrounding brain with use of proton therapy for a brain tumor. There is a higher radiation dose delivered to the actual tumor and margins with a sharp drop off to the surrounding brain.
2. A higher radiation dose to the tumor and margin permit more effective killing of the residual invisible tumor cells present.
3. I am a young patient and deserve the best possible treatment for my brain tumor/cancer with the least side effects or toxicity to the surrounding brain as I am a high functioning mother, author, brain tumor advocate, and brain
Cigna denied proton therapy for me 2 months ago, and denied our first appeal. I never would have thought of it, but my mom contacted our state-level representative and he contacted someone and we won the 2nd appeal last week. Worth a try?
Alex, I have cigna and will need proton therapy for my cancer. Im a bit afraid they will deny. Do u mind what kind of cancer you had and what state you live in? Thank you.