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 action 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 all have tried 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!!! God bless!!
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This is a cut and paste of the answer I gave you on a previous thread.
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.
Hi we had a daughter whose father needed the imrt and Florida Blue Cross turned him down twice he had a tumor that was pressing against his heart. Regular radiation would have killed him because it would mess his heart and other organs he would have died doing it that way. So a bunch of us got On Twitter and Facebook plus wrote some letters that went public. We said if they didn't give him what he needed he would die but not from the cancer,it would be the tumor pressing against his heart and if they let him die there would be hundreds of us cancer patients would make sure we took them down. It's a travesty.If they let him die they would have to live with it the rest of there lives knowing they killed him. They approved it and he got the treatments and than ended up dieing sumthin else. They waited too long to approve the imrt.It he didn't die from the cancer he died from something else I can 't remember what it was called,it was something I had never heard of. If you want to try to get it you need to go public or viral and threaten them. If they turn you down again that there will be hundreds of cancer patients that will make sure there taken down. There is no excuse for letting you die. They will have to live with with the fact that if you die they it's there fault. And make no excuses for them because there playing with your life. I hope this helps love susiejo1948
Hi Susie Jo, how are you doing?? I still check in here but needed a break for a bit as it’s been rough. My dad passed from lung cancer but a complication of lung cancer called leptomeningeal disease. Leptomeningeal is where cancer cells break off from the original tumor site (in my dad’s case his original tumor site was the one next to his heart) and find their way into the cerebrospinal fluid through the blood brain barrier and into the meninges of the brain and spine. The lung cancer cells did not form a tumor in the cerebrospinal fluid and meninges, but was free flowing in the fluid. This came suddenly with no metastasis and without warning. His cancer never formed any further tumors anywhere in his body. This is typically a long term survival complication (5 plus years out) but in my dad’s case it was within 8-9 months. I know this topic isn’t about that but I just had to take the opportunity to reiterate it since you said exactly what I have encountered - you have never heard of it and you’re right, most people haven’t. Hopefully I can have a small part in helping to change that. And it scares me because it is something everyone with cancer, especially lung cancer, should know about and push for treatment research on it. Thanks for letting me step in 🧡 I hope you are doing well! And to the original poster, I responded to you at length under your question to me on the other thread.
Lisa - I am so sorry to hear about your father. God bless you and him. I must tell you that with you Lisa and your courage to post online, I am sure that I would not have got my treatment approved.
I think you are right that you should keep spreading awareness of what you mentioned about your dads complication, if only more people had the knowledge of these things then more lives would be saved
I am so happy you got IMRT approved and that my posts were able to help you! I appreciate you taking the time to let me know! Shortly before my dad passed of the leptomeningeal disease from the lung cancer, we did find out he was responding to the IMRT and it was working. The tumor next to his heart shrunk 30% at that point and was continuing to shrink. My dad did not respond right away to IMRT which can be normal for radiation. A scan over a week later showed no shrinkage whatsoever. It was later scans that showed the shrinkage and when we first knew he does, in fact, respond to radiation. In reality, I still question whether my dad passed from leptomeningeal or the SVC syndrome from the tumor by his heart as the nurse turning him in the hospital bed caused his blood pressure to immediately dive. He was responding to brain and spine radiation. But if we could do it all over again, I would change nothing about IMRT as it was the best radiation for my dad at the time. And I am happy you fought and won as well! My prayers are with you!
Denzie is right, we need more information in order to help you fight. Once you supply the information, we can push back at their original decision.
Having been an office manager for a busy psychologists' office, far too many hours were spent fighting insurance companies. It was so disheartening to find out how many people, especially the elderly, did not know they could fight back. The best way to fight back is arm yourself with all the knowledge you can get, have your oncologist write a letter, and get friends to help you.
Hi Denize and Susie, thanks so very much for your replies. Your insights were so helpful.
I want to share great news that I was able to get the IMRT approved!!!!!!!!! May God bless you all. For those that are going through a similar situation I am here to help. I am disheartened by how excruitatingly hard it was to get approval
I want to share the following information on the steps I took (which were very similar to the steps that Lisa took) in case it is helpful for anyone trying to do the same. To summarize i was denied IMRT for radiation treatment for cancer in my arm, both my a standard practitioner within my insurance and also a radiation oncologist within my insurance. My doctor wrote a very strong request but it was still denied, then it was finally approved during external review (when they have an independent physician view the situation):
1) First of all - I think it was very important my doctor wrote a very detailed and strong letter (even stronger and more detailed than the first one that was denied) - I think it may have helped a bit that I continuously called his office and said that I was pushing very hard for IMRT. He said to keep calling my insurance constantly so I did so many times.
What i think may have been helpful was the hospital I was at, although anywhere where there are experience cancer specialists will be great, and I am not putting down any doctors.
2) I kept a copy of all my medical records and so I had them ready when I needed to send a patient appeal to my insurance (pathology reports, CT, PET scan, surgery overview, EVERYTHING YOU CAN FIND)
3) I wrote my own letter stating why the insurance denial was wrong, and I quoted the exact language in the insurance manual / agreement, basically explained the details and severity of my cancer and why the IMRT was necessary to preserve my arm and life and I attached 17 documents of all my medical records. (Note: make sure you make it clear it is expedited as insurance is required to respond by law within 72 hours)
4) I asked human resources at my company to be involved and contacted senior management at my company. Their support was INCREDIBLE to the point where I was in tears. They contacted my insurance immediately the same day I emailed them
5) Getting state insurance regulator involved - I emailed similar documents to the state that handles my insurance with all medical records and explained why it was so wrong what was being denied
6) I contacted the Patients Advocates who said they were getting involved (IMRT was approved before they needed to take any action and contact my insurance)
7) I contacted American Cancer Society who also kept my record on hand and said they would be help in any way possible.
MY next step was to reach out to insurance on social media, but they thank God approved before that was needed
For anyone trying to fight this fight, I am here to lend an ear based on my situation. What is happening now with insurance is WRONG, and I'm taking steps to make sure that laws and legal insurance code are changed in relation to IMRT in the future.
I hope that this perspective can help someone reading this and god bless us all for a strong continued fight against cancer.
Hooray for you!! You took all the necessary steps, probably the most crucial were having your doctor(s) write a second, stronger letter and having documentation on hand. I commonly fought insurance companies for my bosses, and know all too well the frustration that can drive a sane person to want to just scream. Just glad you got what you so desperately need!!
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