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IMRT appeal denied for a SECOND time - case closed now

Update from my previous post - the patient appeal I did for my dad with the 4 page letter and 28 pages of his medical records plus the letter of medical necessity has gone before the Florida Blue Cross medical board where IMRT has been denied for a second and final time today. First appeal denied. Peer to peer with doctor - denied. Patient appeal and doctor medical appeal again - denied for final time today. They will only allow standard radiation and dad’s radiation oncologist will not do standard on my dad as he said it will be detrimental to him given the tumor is pressing into his heart nor will my dad agree to standard for this very reason. I have tried to get a contact email for who made the decision only to be told they do not give out email addresses. I am beyond angry and feel the most helpless I have ever felt as I don’t know what to do for my dad from here. I am contacting attorneys tomorrow to find out info. Does anyone have any further suggestions? I cannot believe this is happening. The tumor growing and pressing into his heart will kill him before the cancer ever will if he doesn’t get radiation asap!!!

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Our state insurance commissioner can send to another state to evaluate. My repeals had been denied within the state. I contacted the state and requested an outside board to evaluate. They approved and my insurance had to pay. This was done years ago and not related to my cancer but another issue. Does your state give you that option? Go to top person in your state who oversees all insurance.

Judy

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Thank you, Judy, for this information! I did contact the insurance commissioner who first told me nothing they could do, but then he called back a little later and said yes he was going to do something on behalf of my dad. He is contacting insurance today etc and trying to get things moving!!! I pray this works!! This is just horrible!!

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I hope this does work out! Praying for you!

Judy

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Hi normally I wouldn't say do this but he's not my dad but I care for both of you. Everyone on here is family to me. I would write the news paper see if they will print it and print on Facebook. Let people know what the insurance is doing. That he needs this treatment to live and there taking that away from him. That's not right. His insurance is killin; him. That is so wrong. Always fight never give up. Tell him to hope. I have a lot of hope. Tell him we will not give up on him. Love to you both susie jo

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Thank you!!! I did a post on Instagram and tagged many important people in it including Florida Blue, who all of a sudden wanted to speak to me and look into my dad. So now I have that going on and true insurance commissioners office looking into it. Much love to you and I hope you continue to feel better and better!!

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I am so sorry. They should be ashamed of themselves. Contact your attorney and have him file a negligence suit against the insurance company. Force their hands. Request an emergency hearing and get this in front of a judge immediately. It’s likely that a judge who has no affiliation with the insurance company and it hospital will be much more reasonable and be able to overturn the appeal. While you’re waiting for your attorney to get that going, I really think change.org can help you. A short story with your dads picture and what’s happening to him will get lots of attention. If you don’t have time to start a change.org campaign ask a friend or family member that you trust to do it for you. It literally takes just a few minutes but the author needs to have All your personal info and access to information about the problem. Don’t wait to contact your attorney. You need to get on this right away. If you don’t have one get in Avvo.com and post your story (in short version) and attorneys from your area will respond with advice and referrals. That’s how I got my attorney in Florida (Orlando) even tho I live in NJ. I had an accident there while in vacation and a great attorney answered my request for help. I hired him that day.

Also, there are other treatments they can be doing now while you’re waiting. I too had a problem with branches of my tumor wrapping around parts of my heart therefore making it inoperable. They started standard radiation at midnight my first night in the new hospital and also started chemo the next day. Tell your Dad you’re working in this and that you WILL get it done and encourage him to move forward with whatever they recommend. We are all praying for you. Once you have an attorney, ask him if it would be helpful or harmful if we all started calling and writing to the customer service line at BCBS. I’m sure they have a website with a “contact us” button.

Good luck friend and love to your Dad.

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Thank you!!! I am one by one doing each of the suggestions on here! So far I have contacted the insurance commissioners office and did a social media list tagging Florida Blue, who them contacted me on social media and wanted me dad’s info to look into. So now I’m going to wait for the external review and to hear back from the insurance commissioner and the other agent who’s looking into it from the social media post and go from there. I have a feeling what was done today may get the ball rolling. But I have been wrong before about it!! Oh, and his doctor will not do standard radiation on him as he said it would be detrimental to my dad based on mapping results. Let’s see what today brings - I got a lot acconplished so here’s to something good happening!!

Have you had any further problems with the tumor by your heart? All my best to you and your continued health - you have a huge, caring heart and it shows!!

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Blue Cross and Blue Shield of Florida

Company

Image result for florida Bcbs

floridablue.com

Customer service: 1 (800) 352-2583

They can’t hide from us!

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Media Inquiries

1-904-905-7864

You can also contact your local news station and tell them what’s going on. Insurance companies don’t like negative attention so sometimes they cave in just to avoid it. I’m so angry at this red tape BS I could scream. If I New all the details of your dads situation I would write the change.org campaigns myself. If you decide you need help with that please feel free to email me and I will write it this afternoon after my therapy. You can send me a short bio and his picture and I will help you get some attention. The first step needs to be an attorney with an attitude and general distaste for insurance companies 😡. My email is ynkefan7@gmail.com if you need it. So sorry this is happening.

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I tagged local news stations in my social media post which prompted blue cross to reach out to me today! I am going to see what the insurance commissioner and this latest social media post accomplishes and change.org is my next step after that.

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One more thing. I just sent a message to a friend who’s a doctor in the Tampa area and asked him what should be your next steps. I’m waiting to hear from him and will post his response as soon as I have it.

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Thank you! My dad’s main oncologist is in Tampa st Moffitt but we live in Orlando and his radiation oncologist is here in Orlando also. The next thing might be seeing if Moffitt can fight it.

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The sites new partners are very knowledgeable and may know how to get the name and email address of the person we need to write an email campaign.

In the meantime we could all start calling the customer service number ynkefan shared. Could you tell us your dad’s name and his doctors name?

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Hi Denzie! His name is John English and it’s Dr Justin Rineer. I talked to the insurance commissioners office and they are contacting insurance today on my dad’s behalf so he thinks he can push it a bit and maybe get somewhere but I have been wrong before!! I appreciate everyone’s help! Thank you!

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I would contact my government representatives. If no positive response go to whoever they are running against and volunteer to be part of an opposition ad. And of course your personal injury lawyer.

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Good advice! I have started contacting those people today!

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Hi Lisam81, Hugs going out to your father and entire family. Have you reached out to the Patient Advocate Foundation? They have tips on appealing insurance on their website and would be a a good nonprofit that may have other ideas. patientadvocate.org/cardio-... . Their phone number is (800) 532-5274.

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Hi we did call today and we were told we would receive a call back in 1-3 days, and that’s expedited they said. So it will be a few days before we hear back. Thank you so much for this info!

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It looks like you have things starting to go in the right direction. No insurance company or hospital wants bad press especially when it comes to cancer patients. Maybe all this will lead to pro bono treatment if you don’t get insurance approval. We had a hard time getting some scans approved because they were out of the time guidelines. Well, my oncologist called some members of the board of directors at the cancer center and said “if it doesn’t get approved she’s having these scans anyway and YOU ALL will be footing the bill!” They steppes in and everything was approved in 48 hours. Sometimes you just need to make a lot of noise. Good luck !

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Thank you! Blue cross contacted me over the social media post. They said they are going by their guidelines. I told them their guidelines are a bunch of crap because they find standard radiation and radiation to his entire heart acceptable!!! She just got quiet on that. I told her I won’t stop!! I can’t imagjne how many out there are going through this!! This is NOT acceptable for anyone!! They are okay with failing his heart with standard radiation - they find that acceptable!!! I will not quit!

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Their guidelines consists of how do we make the most money while killing off patients needing the most care. You talk about your death panels. I might have mentioned I get 100% free public healthcare through the Veterans Affairs .(Got it the hard way by going to Vietnam). I really don’t feel I deserve it more than any other American however. I think the country could pay for this with copays geared to your overall income and a small national sales tax. Eliminate these expensive paper shufflers, ceos, etc. Has a Blue Cross employee ever taken your blood pressure or in any way directly given you healthcare? Sure, retrain these people. I guarantee the ceos will still retire comfortably with their golden parachutes, off shore bank accounts, and huge trump tax cuts. (Your political pitch for the day.)

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Oh Lisa I'm so sorry you have to go thru this. I'll see what I can do. I need your dad's name and insurance and I'll see what I can do. I'll start with facebook I've been wanting to write how I feel about all this bull crap. So I will really try

Tell your dad and you I love you guys. susiejo1948

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Susie Jo, you’re a sweetheart!! His name is John English and it’s Florida Blue Cross. I can’t even imagine how many people out there aren’t getting the necessary treatments because of insurance. This is completely heartbreaking!! I’m making noise on my end. So far blue cross contacted me over my social media post. I told them I won’t stop!!

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Lisa I did face book if they don't like social media I just wished I could see them when. They read what I wrote. I don't know if you seen it.but all my family and friends got it on there page. The nasty insurance Florida blue cross better approve it. You can go to Facebook and look up Susan Walls I hope it helps. Love susie jo1948

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Susie Jo, thank you so much!! I apologize for the delay - we have been in Tampa all day at Moffitt for my dad’s scans and treatment, which was then cancelled as they failed him on chemo now. Blue Cross denied IMRT again today. 😔 We are at the end of the road with it now as his cancer has gotten even bigger and they said he will die if he waits on radiation, forcing him to accept standard radiation to a tumor wrapping around his heart. I am going to do a brand new post on an update now, just because this one has gotten so long. Thank you so much again!!! You’re so sweet and helpful!! I am going to do an update post now on a new thread. I hope you are doing well!! 🧡

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For anyone who is interested - Florida Blue is sensitive to social medial posts I found out today. So any posts you do tag Florida Blue or whatever the page is for them. I found they do not care for social media posts!!

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I guess it’s time we all started posting then huh? I will tag them on twitter as well as Facebook as soon as I get back home. Let the games begin!

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Lisa I'm about to write a post on Facebook. Could I have your name and your dad's.I really want to help so please let me. Love susie jo1948

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Hi Lisa,

I am a young patient (under 25 year old) with cancer on my arm and I am facing a denial by Blue Cross Blue Shield of Illinois to have IMRT both my their standard physician and a radiation oncologists (they want me to have the standard treatment) which my doctor has informed me will have serious negative impacts. I am taking all the action that you did in your previous posts including posting on social media (it looks like they have a facebook for Illinois but not an instagram,) calling the New York State Insurance commissioner today (I am a resident of NY, calling the American Cancer Society to see how they might be able to help, calling the patient advocates line at 800 532 5274, and I am emailing a formal complaint and appeal to BCBS.

I am wondering if there is anything else that you did that you think would help in my case and what exactly did you post on social media? I noticed that you said you tagged a-lot of important groups, other than BCBS who would that be??

I really appreciate any insight that you or anyone may have into my situation!!!

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The only insurance that will cover the IMRT is Medicare. If I remember correctly, the reason we were able to have success with

lisa’s Dad’s case was because he was on Medicare also.

Are they talking about stereotactic body radiation therapy or traditional radiation of 30-35 treatments? How large is the primary? What type of cancer is this on your arm? Is it a metastasis from your lung? Was any genomic testing done on your biopsy materials? What was the outcome of the testing? In order to help you or to guide you to someone who can I will need that info.

Also, your doctor may recommend IMRT but if your hospital doesn’t have it it may be denied for that reason. You might also do a quick inquiry into proton radiation to see if it is covered by your insurance.

In the meantime, are you on Twitter? In some cases they have responded to a bit of a twitter shaming.

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Hi,

First, I am sorry you’re going through this but I’m happy to see you fighting for yourself medically. Second, yes, my dad did have My Florida Blue (Blue Cross). He did pass in late November so I have actually taken a small break to deal with the loss and try to regroup a bit if that’s such a thing. You didn’t say what kind of cancer you have on your arm - is it melanoma? My dad’s situation was a bit different as he had a primary lung cancer tumor that had actually wrapped itself around the SVC of the heart, which standard radiation would have not been as ideal as IMRT due to the seriousness of the surrounding organs (heart etc). Your radiation oncologist should have done something called “mapping”. In mapping, he should map standard radiation and IMRT or SBRT (which may be an option for you as well). At least my dad’s radiation oncologist did. He actually sat down with my dad and I and showed us the angles each type of radiation beams would enter and exit, what organs or structures would receive the most amount of radiation and by how much. In doing this, it was found that IMRT was superior for my dad over standard radiation in that his heart, bronchus and lungs received less radiation with IMRT. You and your doctor will need this info to proceed with all insurance appeals.

I also learned a lot in that there ARE cases where standard radiation and IMRT can be very similar in comparison as to the amount of radiation surrounding areas receive so the mapping is key to figuring out which radiation is best and why and will be your best data to use in the appeals. Your radiation oncologist should be able to go over the pros and cons to each and let you know how standard compares to IMRT/SBRT. IF mapping had shown standard radiation to be equal or close in comparison to IMRT for my dad then we would have went ahead confidently with standard radiation since my dad needed radiation ASAP. The mapping showed the benefits to IMRT for my dad were worth the fight for it over standard, but it was a long and hard process. So first, know if you have received mapping for radiation and ask to discuss the types of radiation mapped and which is better and why and by how much it’s better. A 1 percent difference or so may not be worth the fight and the time lost if you need the radiation ASAP.

Once you receive a denial from Blue Cross your doctor needs to do a Peer to Peer appeal on the phone on your behalf. Your doctor will need to draft why the denied radiation is superior over standard, highlighting the complications standard may cause you, if it actually is the worse radiation for you. Just wanting IMRT over standard when both are comparable will not get insurance to overturn and vice versa. Insurance companies are ruthless from what I found out, especially blue cross. Next, you will need to call your insurance and find out how you can start a patient appeal on your end. In my dad’s case I wrote a 10-12 page appeal letter and it was faxed to blue cross along with the submitted form for him. In this letter I highlighted how standard would cause more future medical issues for my dad, thus in turn causing insurance to pay out even more money in the long term for my dad than if they had just approved IMRT. I made copies of my dad’s medical records and highlighted the SVC syndrome caused by the tumor on the heart etc. The peer to peer by his doctor was denied again. The patient appeal for my dad was also denied and we had excellent reasons. Have your case assigned to one direct person at Blue cross and find out the contact number so you can deal with them directly.

His radiation oncologist started drafting another appeal on his side that he took several days making sure he had all the info listed and highlighted. Insurance is very picky about what they want to see to overturn a denial. If you keep bothering Blue Cross you may eventually talk to someone with a heart who will give you hints at why it was denied and what needs to be done. I made no less than 40 calls to blue cross and I got lucky on several occasions and bombed on others. I called the Florida insurance commissioners office to get someone there to help my dad. They initially said no, then I suppose felt sorry for me and called me back 10 min later and said if it was their dad he would want someone to help him, so he was going to try to help me and work on it. He was in the background working on things. I called a few attorneys but they wouldn’t deal with it. I attacked them on Facebook and Instagram and a social media rep from blue cross immediately contacted me. That social media rep got things moving after I sternly told her I have had enough of what they’re doing. She called my dad the next day to try to work with him. Last but not least, and probably the most impactful, there was a twitter campaign against Florida blue cross and that, or a combination of all, was why they called and overturned it 2 hours before my dad was set to get his first standard radiation treatment. Before that, we were denied over 5-6 appeals. This went on for weeks and almost 2 months or so and I spent many hours a day working on this for my dad. It’s not easy, it’s highly time consuming and will eat up a lot of time if you need radiation now. With that said, if you and your doctor know that standard will cause severe issues and you have the time to try, those are all the steps I took and so many countless hours on the phone with Blue Cross trying to get somewhere. But first, do the mapping for each type of radiation and have him show you which radiation is best and why and highlight the pros and cons to each radiation at the angles it needs to enter and exit your body. My dad’s radiation oncologist actually showed me the graphs and the charts and put them side by side. It’s very informative and will help you know if this fight for an appeal is worth the work and time lost on not receiving radiation yet. I hope this helps and I wish you much luck with everything!!

Lisa

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