Lung Cancer Support
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Insurance denied IMRT!

Has anyone ever been denied IMRT by insurance?! It has now been several weeks since we found out my dad’s tumor pressing on his heart is no longer stable and is slowly enlarging. So far from 4.2 to 4.9 cm but that was several weeks ago and could be changed by now. He has a 5 inch blood clot because of the SVC syndrome caused by the tumor pressing on right atrium and ventricle of his heart. Radiation was held as tumor was stable with chemo, but that tumor is now slowly enlarging. It is also pressing into his bronchus causing shortness of breath. Proton therapy was recommended, however the radiation mapping showed IMRT and Proton was so similar in radiation spill out given the angle of the beams for his tumor. Proton was denied by insurance so IMRT was agreed on as the radiation oncologist said the IMRT plan he has devised for my dad is an excellent plan and one he would want his loved ones to receive were it him. Time is also VERY critical!! It was submitted to insurance for IMRT, 15 treatments for tumor control of the chest tumor pressing into his heart and near and on critical organs. Insurance just denied my dad last week for IMRT stating “not medically necessary”! Has anyone heard of this???? Dr said standard radiation would be devastating to my dad given the placement and location of his chest tumor on heart and bronchus. We are beyond upset.

The dr did a peer to peer review with insurance and the denial decision was still upheld. Last week I wrote a 4 page letter for my dad along with 30 pages of medical records to submit to insurance for patient claims appeal. Insurance is Blue Cross Blue Shield Florida. I don’t know how they can do this to people with cancer. 😢 I have been researching like crazy but I’m so at a loss on what to do or where to go from here. Dealing with insurance isn’t really getting anywhere and time is running out.

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Oh Lisa, I am so sorry for this horrible problem with insurance. I just had the same radiation for 10 days and my insurance is Blue Cross Blue Shield. This is just not fair or understandable. Have you spoken with them personally?

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Oh it’s so horrible! I have spent all last week on the phone with insurance, hours daily. I have done 3 way calls with BCBS and AIM and talked to so many departments. It’s denied no matter what I do and the peer to peer my dad’s radiation oncologist did with the dr who works with the insurance upheld the denial and closed the appeal. Then I wrote a 4 page appeal letter for my dad detailing why he needed IMRT over standard and listed what standard radiation would do to him and included 30 pages of his medical records to start the patient appeal. I was told this would not be enough to overturn the denial as my dad’s doctor had to do another appeal but the timeline for dr office to do anything on my dad’s behalf is tomorrow at 1 pm. I was also told even that wouldn’t be enough. They keep saying it’s denied because not medically necessary. Everything about this is medically necessary for my dad and I’m beyond upset and frustrated.

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Does your Dad go to a hospital or cancer facility that is covered by BCBS?

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Yes, he goes to Moffitt in Tampa and we’re in Orlando and for radiation his doctor is at Orlando Health Proton therapy and radiation center, both of which are covered by his insurance. BCBS has covered each radiation oncologist visit and they approved the mapping to be done for IMRT and Proton. Then in the end they denied both of those.

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Something just doesn't sound right which doesn't help you or your dad. I wonder if this would of happened if Moffitt was doing the radiation. I am up a Mayo Clinic in Jacksonville and have had no problems with approvals from BCBS for 4 years. I feel horrible for you and wish I could help in some way. Please keep in touch and keep pushing for your Dad.

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Don't give up. You are a wonderful daughter.

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Thank you! I won’t give up!

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I’m gobsmacked. Some have had luck by starting letter writing campaigns. If you can supply me with the email addresses of the people at BCBS who are the decision makers and your dad’s name and his doctors name I will write a letter and reach out to friends to write as well.

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Denzie, I cannot thank you enough or tell you how much it means to us that you are willing to write a letter on my dad’s behalf!! You are truly wonderful. As of now, I don’t have an email address and no one can tell me one so far today. I just have the fax line I sent the patient appeal to. I have been on the phone with insurance all day trying to get somewhere and I heard from the dr office who said they are rewriting the letter of medical necessity and hopefully this will work. I will keep you posted on if it doesn’t work. Thank you so so much again!!

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What contact information was on the notice of the denial?

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We don’t have the IMRT denial letter in the mail yet since this denial just happened last week, however we do have the proton denial letter which I’m sure is the same. I went through it and no email, only a physical address for appeals and a fax number, which is the fax number we used to fax the appeal. Florida Blue contracts with AIM who makes the decision for BCBS. The denial for proton therapy says “does not meet the definition of medical necessity” and I assume the denial letter for IMRT will say the same thing once we get that in the mail as that’s the reason they told us on the phone. We were also told that because his cancer is metastatic they won’t approve IMRT for metastatic cancer but then someone at insurance told us that was BS so I just don’t know. Other than being told doesn’t meet definition for medicinal necessity. But no email addresses.

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I’m so sorry you have to deal with this on top of the cancer. Anything the doctor orders should automatically be considered medically necessary or else why would the doctor suggest it?? So stupid. The others are right. You need to supply us all with the contact info and then we can all write in his behalf. I would also consider a petition on change.org and add a donation link. This way if the petition doesn’t help get the denial reversed then maybe you can get enough in donations to cover the treatment. GoFundMe is another option to help raise money for the treatment if it doesn’t get overturned. That’s really terrible. I hate insurance company people who sit behind a desk and stamp things denied. What if it was them or God forbid their child?? Please don’t give up hope. Reach out to every cancer patient advocate organization you can find. Even the American Cancer Society. Maybe they can give you some advice. I’d also ask the Center or hospital where he is being treated to assign you a social worker because they can advocate on his behalf. Wishing you good luck and good health.

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You are so correct!! Insurance companies are ruthless! I always knew they were but after what they are doing to my dad I am in complete awe! I am not getting anywhere with insurance today, yet again. The dr is doing another letter of medical necessity and we will see what insurance does with that but it better be something soon!

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One more suggestion, maybe see if Moffitt has any type of financial assistance program for their patients? If they do, have your dad apply for it?

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That is good idea. I know Proton center in Jax told us they had grants to help if need be. It wasn't but nice of them to offer.

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He’s not going to Moffitt for radiation but UF Health proton therapy center and radiation in Orlando. We have a proton therapy center 5 miles away and since he has to do radiation for 3 weeks and Moffitt doesn’t have free housing available, if he goes to Moffitt and hotel for 15 days it’s so expensive. My dad did apply for help from a social worker at Moffitt and he was offered a $100 gas card but only if he jumped through hoops to get it.

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Might there be apartments close by especially for patients? I would ask about housing while in treatment.

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I am so sorry, that is ridiculous that they don't offer cancer patients any real assistance.

Ask UF Health about financial help to cover expenses, tell them what BCBS is doing. Go right to someone in administration. You have nothing to lose.

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I always suggest you appeal any and all insurance denials, they are often reversed with more data. Sometimes its a matter ir providing additional medical records, please don't give up. Think positivel

Lisa

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Thank you, Lisa! The dr is doing another letter of medical necessity now for insurance again. The first was denied and the peer to peer was upheld and denied again so we lost one appeal. We did a patient appeal last week so hopefully something will change this week. My dad doesn’t have a lot of time with the tumor growing and pressing onto his heart so I hope and pray something changes this week. I am on top of it.

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UF Health in Jacksonville saved my life. Maybe you could see them in Gainesville, because it is a state teaching hospital you may have different results and financial assistance available. I'm not on Medicare but wondering if your Dad is or if that would have anything to do with it one way or the other.

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My dad has Blue Cross Blue Shield Florida (Florida Blue). He is going to UF Health Orlando proton therapy center - it sounds like the 2 might be related?? We have not been told of financial assistance there but I will definitely check again!

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You have to ask, most places won't advertise that they offer it.

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I am so sorry you are having to endure this frustration. It’s stressful enough to watch someone you love suffer through this horrid disease but then the insurance company adds to the pain! I don’t understand how an insurance company can override the decision of the doctor without ever having laid eyes on the patient. There’s a lot of factors to be considered when treating a patient besides medical test/records.

I pray this fiasco is soon cleared up and your father gets the necessary treatments. May God bless you all as you continue on this journey.

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Thank you so very much! I didn’t realize insurance was this ruthless to cancer patients so it’s been a real eye opener! I feel like I was blind to all this before! My dad’s case is very time sensitive so I pray they have a heart and quickly. We are still working on it today and so is his dr so something better be happening this week!

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Hey is your Dad able/old enough to apply for Medicare? I was able to get immediate coverage because stage 3,4,5 cancer patients get priority even though I’m only 48. I had a Social Security attorney apply for SSD and was approved in less than 30 days and then Medicare picked up my treatments. They now cover all my clinical trial scans, meds, visits and I pay a small copay. I dropped my BCBS that I had through my husbands employer because they wouldn’t even cover the new blood thinners for my blood clot once I left the hospital. They would only cover Coumadin. So ridiculous. They also jacked my rates up to almost $600 a month because renewal time came a few weeks after my diagnosis. That should be illegal. Also, consider Airbnb for a place to stay while in treatment. I was able to secure a 2 bedroom apartment in north jersey very close to my cancer center(I live 100 miles away from it) so that I could do my radiation 5 days a week. I explained to the owner why I needed it (it was listed for $80/night) and he gave it to us for $30 a night. I’m not a huge fan of playing the cancer card but sometimes you need to appeal to people’s human side to catch a break. We stayed in that apartment 5 days a week for 5 weeks and went home on the weekends. $150/week is pretty cheap considering. It’s something to consider. Don’t give up. It sounds like you’re a good advocate for your Dad and I’m sure everything will turn out ok.

Good luck! Xoxo

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Wow never heard of any Medicare plan offered before qualifying age. Is it not Medicaid? Social Security Disability?

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Yes, SS Disability on an emergent basis (to bypass the open enrollment restrictions.). Hired a SS Attorney here in NJ and she got it done for me in a very expedicious manner. 😊😊😊 No Medicaid.

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Your case sounds very unique....was your actual "date if disability" determined to be well before you actually applied?

I worked up until the time I applied. So I had to wait six months for my first payment. My disability date was the first day i was out of work. 24 months later I was given Medicare A, I'm under 65 and covered under my husband's group health plan, making Medicare only a secondary payer.

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I was out of work still from a mrsa infection I got during hip and knee surgery. I was out in workers comp. when she applied for the SSD for me they paid me back to my LC diagnosis date. As far as I know there are a few conditions that make you eligible for emergent approval and Lung cancer is one of those things. So is kidney failure. I’m sure there are more conditions as well but not sure what they are.

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That explains why you rec'd your Medicare so quickly. The 24 months is based on the "date of disability"(versus application date). I had to wait the two years because I had been working uo until the day I applied. No retro for me. But I'm still on my husband's group plan and since were both under 65, it's my primary coverage.

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Yeah but I didn’t get the disability for my hip and knee issues. I got it for the lung cancer and that diagnosis was only 2 months before I applied for it. It can’t hurt to ask a SS attorney about your situation. Ya never know

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I'm fine, i already have my SSDI and Meducare.

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My question is the same as Spainy’s. Perhaps you meant Medicaid? When diagnosed with stage 4 I was told I qualified for Social Security Disability but I would have to wait 2 years to receive it.

Also, stage 4 is the final stage. Stage 5 would be death.

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Not sure where my answer went lol. I posted a reply and it disappeared...must be my connection. Anyway, in short...I was approved for SSD on an emergent basis and was given Medicare part A. I got to choose my Part B and prescription coverage. I chose AARP Medicare complete because it has no monthly premium. That was in 2015 and I’m still disabled and still collecting SSD and on Medicare. I don’t qualify for Medicaid because of my husbands income. Nor do I qualify for SSI. Maybe because I hired a SS attorney and she knows things the rest of us don’t...but she got it done in less than 30 days and I was able to cancel my BCBS. Maybe consult a SS attorney and they can give you advice...or whoever needs it. I hope this clears things up 😊😊

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He’s 64 so he can get Medicare next year but honestly he’s a bit scared of what Medicare is going to do with his treatment. He has to find out if his doctor at Moffitt even takes Medicare as a lot don’t. He did get SSD but it was some low number like $139 a month. I keep hearing bad stories of Medicare with cancer treatment so I’m happy to hear it’s working for you! I will definitely look into airBNB. The treatment varied greatly between Moffitt and Orlando health proton center. Moffitt only wanted to do 5 radiation treatments and Orlando 15. I think my dad definitely needs the 15 IMRT treatments. It’s a big mess.

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Hi

I’m sure Medicare will take care of him if his doctor takes it. They paid for my 45 radiation treatments, 10 rounds of chemo, 9 months of clinical trial testing and infusions and now they cover my trial scans every 3 months. With the AARP Medicare complete plan thru United Healthcare I no longer even need authorization for scans. I just had a hip Mri and some other non cancer related scans and they covered them except for my copay amount. I think I paid $123 for a CT of the chest, abdomen and pelvis. That’s not too bad and if you have a secondary insurance they would pick that up. Private insurance nowadays seems to have as many if not more hoops for you to jump through than Medicare does. At least that’s been my experience. I hope everything works out for you guys. I’m praying that it does. 🙏🏻🙏🏻🙏🏻. It seems this relentless disease fools you into believing it’s gone and then WHAM...it shows up somewhere else. Bottom line is cancer just plain sucks lol.

Be well!

D

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Thank you, that’s good to know about Medicare! We have been really unsure of it and I have heard so many stories of how they won’t pay for immunotherapy etc and if they do it’s not a lot. We’re still fighting for radiation now. Another week went by and nothing except finally was told today the appeal is going in front of the medical review board so I hope no later than next week we will hear something. All my best to you - this is a relentless fight!!

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I wish you guys well with the appeal. I will say an extra prayer each day until you hear back from them. Xoxo

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One thing I forgot to say. If he gets approved for SSD he should get a monthly check based on what he’s earned over the years...even at my age (and I’ve not worked in 10 years now) I get around $1300/month. Not enough to do much with but it’s better than nothing. You should check online be for him and look at his SS statement. They used to mail them out every couple of years to show what you would make “should you become disabled right now “. But now they have them available on line at SocialSecurity.gov or something like that. Just a bit of info he might want to have..

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