Topic: Insurance Driving Me Nuts!

Anybody have a magic wand or a baseball bat to knock some sense into these insurance people??  I AM SO FRUSTRATED!  Charlie has had about everything there is to have for this cancer.  Blue Cross Illinois has denied the SIRspheres procedure that seems very promising for cc. They are microscopic beads of radiation injected directly into the liver tumors through the femoral artery.  Charlie doesn't have mets yet.  We're in NC, but his insurance is Illinois because he was the Photo Lab Supervisor at our local Walgreen's before his diagnosis and subsequent disability.  Walgreen's is still paying for Charlie's insurance until 12/31/08 and then we have to go on Cobra.  Dr. Kennedy in Cary is trying.  We're in the appeals process.  There's a guy with the Sirtex company also trying to get them to approve it.  In the meantime, Charlie's taking a lower dose Xeloda oral chemo pills and very uneasy that without more treatment the tumors will grow.  It's not looking good.  Our oncologist at Wake Forest Med. Center said he wouldn't write a support letter for Charlie to the insurance company.  We feel like he's giving up on Charlie.  I just don't get it.  I want to hit something!!!!!!! 

Thanks for letting me blow some steam off.  If anybody knows of anything else we can do to get BC to approve the SIRspheres, please let us know.  If it is finally denied, I don't know what Charlie can do next.  The doctor said his tumors are too big for Cyberknife and wrapped around the biliary tree so radiation wouldn't be good either.  (Charlie had 25 radiation treatments this past Jan. after his resection).  I'm thinking Tarceva, Nexavar, AZD6244, Avastin?  Any other ideas or information is greatly appreciated. 

Carol

Re: Insurance Driving Me Nuts!

Carol, I wish had some words of wisdom having just done the fight. I know that most doctors will fight for you so perhaps a change of doctors? I also know that Cyber knife cannot be done to tumors that are too big but I don't know what that size limit is. And the Insurance company did insist Teddy have radiation first. It did shrink the tumor to the "right" size. I would be ready to hit someone too. I just don't understand a doctor refusing to write a letter. Maybe someone else can give you some good guidance on here. Its just all so unfair!!!!  Vent and rant all you want!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Insurance Driving Me Nuts!

Today, I had been told that the tumor must be less than 6 cm for cyberknife to be an option.  Carol, did the oncologist give a reason as to why he did not want to support you with a letter to the insurance company.

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Insurance Driving Me Nuts!

Thanks Lainy.  I'm so glad Teddy is getting ready to have Cyberknife. 

Hey Marion, no reason, but believe me, I'm going to ask.  Same doctor that wouldn't sign the form for a handicapped sticker for Charlie.  He doesn't want to sign anything or do anything extra.  Nice guy, but I don't understand it.  Maybe it's time for us to go back to Chapel Hill.  It's a 2 hour drive, but might be worth it.  I guess Charlie's tumors fall into the more than 6 cm category since he can't have Cyberknife.  Thanks for finding that out.  It's good information. 

Does anyone know of (especially the NC people on here) of any oncologists at Forsyth Hosp. or Wake Forest Baptist Med. Center who give a damn??  Sorry, just slipped out, I'm still so frustrated.  Charlie is still eating, doing what he can when he feels like it, definitely not ready to give up.  But when your doctor seems to give up and insurance denies, what do you do?  I mean it's possible Charlie could live quite a bit longer with the spheres procedure.  He's in good health except for his darn liver, no mets, good attitude.  But if we keep waiting....well we know what will happen.  There I go venting again.  Thanks.

Carol

Re: Insurance Driving Me Nuts!

Wow, Carol, sorry to hear you are having a tough time.

As far as oncologists, we have seen Dr Paschold once and really liked him. We have a second opinion appointment with Dr. Shen at Baptist.

If you still need the handicapped parking tag, see Charlie's primary care physician.

Re: Insurance Driving Me Nuts!

I understand your frustration.  BCBS has denied me a PET scan that the interventional radiologist thinks is necessary.  Does anybody have a template of an appeal letter I can use.  I have NO IDEA how to write one.  I have no idea what I'm doing.  HELP!

- Suzanne

Re: Insurance Driving Me Nuts!

Suzanne,

The appeal should address the reason for denial and the specific plan provisions that cover the type of treatment you are seeking.  For example, if BCBS denied the PET because it was not "medically necessary", you should appeal their interpretation of medically necessary (it should be defined in your plan document).   Your physician's office may be able to help you there.

Didn't someone just post the findings of a study that showed PETs really can help in the diagnosis of his cancer?  That may be helpful to include aslo.

I would also get your employer involved (asssuming it is an employer sponsored plan).  Chances are you have a "self-insured" plan so the employer is actually the decision maker and the insurance company just an administrator in that case.

Let me know if I can help.  Keep fighting.  Good luck.

Bill

Re: Insurance Driving Me Nuts!

I do believe that I read a post somewhere about PET Scan studies & relavence to diagnosis of CC. I can't seem to find it now but if I do I will post it.

I also posted that in my husband's case, nothing was showing up on any of the other tests & that the liver needle biposy & PET Scan were the only tests the showed that he had CC in 95% of his bile ducts. Until the PET was done they were not sure what was going on except that it was suspected that he had some type of cancer. I honestly feel that with the interahepatic bile duct cancer, especially if it has not spread to anywhere else, the PET Scan is the most effective & important test to diagnois it and that it should be suggested as early on as is possible. Now you need to get BCBS to agree to this! Can your Doctor & Radiologist submit something to them to convince them that it is "medically necessary"? I for one feel that it is & I am sure so do many others. I am hoping for the best out come for you in this situation. Don't give up. Keep on fighting.

Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: Insurance Driving Me Nuts!

BCBS denied the PET because they say it is "experimental and investigational for cholangiocarcinoma".

- Suzanne

Re: Insurance Driving Me Nuts!

They are absolutely crazy!!!! PET Scan showed the best results for Teddy and he has had 2 in the last 6 months. In fact his cyber knife was based on the fact that the PET Scan showed no other cancer!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Insurance Driving Me Nuts!

Here is the post about the article on PET scans and their effect on treatment:

http://www.cholangiocarcinoma.org/punbb … hp?id=2179

Patty

Re: Insurance Driving Me Nuts!

Suzanne

The article that Patty posted about PET scans is under the New Developments section.  It may be very useful in fighting this.  I have really no answers but keep in mind that the goal of insurance companies is NOT to spend money.  So this needs to be presented in a way that shows them what they're actually saving by doing the PET scan.  What other tests/procedures might *conceivably* be needed if the PET scan is not approved...MRI, biopsy?  What expenses are they avoiding by approving it.  Your doctor should write a letter of medical necessity that addresses these issues and they do that all the time.

It must be so frustrating...I'm sure there are no words to convey that!  Keep fighting...persistence can sometimes make a big difference

Wishing you all the best in this fight on all fronts.

Jean

Re: Insurance Driving Me Nuts!

Hi Jean,

Thanks for the info.  My doctor says he will help me only AFTER I make the appeal to the insurance company.  What am I, a doctor?  I don't have the medical knowledge to make a proper case.  This is so frustrating!  Plus, I'm getting information from a family friend/radiologist that the liver normally shows up very bright on PET, so it's really difficult to see anything.  But I read on this web site of people getting good information from a PET.  I'm very confused.  I don't want to give up but this is almost more than I can take.

Suzanne

- Suzanne

Re: Insurance Driving Me Nuts!

Suzanne,

I understand your frustration & aggrevation. Everything involved with CC is so confusing and none of it really makes sense or follows any rules. If BCBS has already denied you once I don't understand why the doctor &/or Radiologist won't assist you until you do an appeal on your own. Like you stated, you are not a doctor & don't have the knowledge to make a proper appeal with the information that they need to hear to get them to change thier opinion. Maybe someone on the site has had to go through this process & will come up with something to help you out.

As for the PET Scan. The way it was explained to us is that it will show things that other tests do not, especially within the liver.  I believe it has something to do with a small amount of radioactive type material along with a sugar type substance that will deliniate any hot spots within the body. Keep in mind that we were under a lot of stress at the time that all of this was going on so I may not have this exactly right, but that is how I understood it.

There has got to be a way to prove to BCBS that this test is vitally important in diagnosing your disease. Also as Jean stated, doing the PET could conceivably save money by eliminating tests that may not be as effective. These insurance companies think they are God, but they are not & it is so unfair that they can play with people's lives this way. Don't give up Suzanne. Keep on fighting for what you want and need. I wish you the best with your fight with BCBS & your fight with this horrific disease. Take care. I will be thinking of you. Keep us up to date on how things are progressing.

Lots Of Love & Hugs,
Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

15 (edited by Jean Sun, 21 Dec 2008 00:21:50)

Re: Insurance Driving Me Nuts!

Suzanne

I just can't imagine how frustrating this must be and I certainly don't understand why your doctor will only write a letter of medical necessity after you appeal it.  That makes absolutely no sense and only puts off the scan...it just seems wrong!  And it does seem unfair to put you in that position...as you said, you don't have the medical knowledge to make a proper case.  And how many people would!

I do know someone who works at a PET facility here in Seattle.  I will give her a call on Monday and see if she can put me in touch with the person who does their insurance authorizations.  I'll see if I can find out what would help obtain authorization, what wording to use, points that need to be made etc.  Hopefully I can find out something that might be useful.  I'll post on Monday and let you know what I learn.

I disagree with the information regarding liver lesions not showing up well on PET scans...I have seen PET scan images and a tumor is very easily seen.  I hate to disagree with a radiologist :-) but I just think he's wrong!

I am so much hoping for some good news for you.

Jean

Re: Insurance Driving Me Nuts!

Wow!  I love this website!  Thanks for all the support and the advice.  I'm blown away.
Jean, you're going above and beyond.  Thank you.  I'll look for your post later today or tomorrow.

- Suzanne

Re: Insurance Driving Me Nuts!

Hi Suzanne

I was able to talk with one person today who was only marginally helpful and am going to try someone else tomorrow, so will post then.  We've had a big snow storm here in Seattle so many people haven't been able to get in.  Hoping a more helpful person will be there tomorrow!

Jean

Re: Insurance Driving Me Nuts!

Hi Jean - thanks for your help.   You guys try to stay safe and warm over there.  Here in the south we're having above average temps.  Hope you had a Merry Christmas.  I'll wait to hear from you as soon as work gets back to normal where you are.

- Suzanne

Re: Insurance Driving Me Nuts!

Suzanne

I'm so sorry for my very slow reply.  I have had a very difficult week...my mother was brought to the hospital with chest pain, which turned out to be an aortic dissection.  She was in the CCU for awhile, but was discharged yesterday and is now home and doing quite well.  She was in a hospital 45 minutes from where I live, in good weather...then add the snow and ice and Christmas and work!   

I did want to let you know what I had found out about your insurance issue.  I was able to talk with three people in two PET departments.  They all said that while you can initiate the appeal, it is only the doctor who really has the power to work toward getting this approved.  I did learn that BCBS in Washington State is now approving all PET scans, regardless of diagnosis, but all have encountered problems with out of state BCBS plans.  The federal government/Medicare lists those diagnosis that they cover and when one fall outside these, the reason usually given for denial is that it is experimental/investigational for that diagnosis.  They all said that it can take a lot of persistence, but that the doctor most importantly, has to be persistent in the appeal...or maybe that the patient has to be persistent in making sure the doctor does what he/she needs to do!  They all suggested that you put in the appeal as soon as possible so that the doctor can do what is needed to help push it through e.g. faxing of all of the requested records.  One person suggested that you obtain the codes involved with this, putting it in your correspondence, and that might speed their processing.  That would consist of the diagnosis code (ICDA) and procedural code (CPT).  Another person suggested that you request a case manager from BCBS and that such a person can sometimes push through appeals/authorizations that might otherwise not have been approved, especially as they become familiar with your case.  Two people suggested that, once you have made the appeal, to obtain the name and phone number of their staff MD who reviews claims and have your physician call them directly.  It's called a peer to peer review.  They said that it is very commonly done and can be a great deal of help in obtaining approval.  They all said that your physician does need to be involved and is the only way for you to get this approved...they were adamant that you simply could not do this alone!  They were all quite surprised that you had been placed in this position and that your doctor was not taking more initiative in the matter.  I was just wondering if it would be helpful for you to contact the person who does the insurance authorizations for the PET facility that you would be using...I found all of these people really helpful and felt that they would certainly do all they could in helping obtain authorization.

There certainly doesn't seem to be any magic answers to this!  In essence, they all said that there wasn't anything that you could say that will really make a difference,  to go ahead and put the appeal in place, and then get your physician involved.

I hope you had a very good Christmas Suzanne.  Wishing you all the best in this new year!

Jean

Re: Insurance Driving Me Nuts!

Insurance battles really stink!

Regarding the whole issue of PET scans: My oncologist at MD Anderson prefers CT scans with iodine contrast rather than PET scans. He says he gets better visualization with the CT scans, especially when they are viewed in series over a period of time for comparison to look for shrinkage and other changes.

However, that is just his experience and preference. YOU should be getting the care you feel you need/deserve. Keep us posted on how things are going.

Violarob in Texas

Re: Insurance Driving Me Nuts!

Wow Jean!  What a lot  of great information!  I did in fact, yesterday, get in touch with my case manager at BCBS and she was able to guide me as to what to tell the doctor to say.  Isn't is silly that we, untrained professionals, have to tell the doctor how to navigate an appeal and what to say.  My case manager also said the appeal needs to be generated by the doctor.   I was able to get hold of my doctor's nurse practitioner and she was able to get the ball rolling with the doctor.  They will do the appeal for me.  I had no idea who to talk to or how to get this going.   You helped give me the back bone to go back to the doctor on this.  Thank you for all your help!  Happy New Year to you and your family!
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Hi Violarob - my understanding for the reason my doc wants to do a PET/CT is because I am looking at doing chemoembolization or radioembolization and the PET will help him see how much of my very large tumor is still viable, so the embolization will be more accurate.  There is a possibility some of my tumor has died due to the chemotherapy I'm on.  Thanks for you support......Happy new Year!

- Suzanne

Re: Insurance Driving Me Nuts!

Suzanne

So glad to hear that everything is moving forward and they finally are doing what they should have all along!  Wishing you a very successful appeal!  The lack of equity in our present medical system is so frustrating and unfair...but that's another subject!!

Wishing you and your family all the best in the New Year! 

Jean