• Registered: Fri, 13 Jan 2006
  • Posts: 4

Topic: Insurance problems

I live in Oregon and was diagnosed with cholangiocarcinoma in November 2003. I was told that the tumor was inoperable because of the location and size. I was also told that standard radiation would not help either. I was given six months to one year to live.  Since the original diagnoses I have undergone every type of chemo available for this type of cancer and the chemo has not  helped . My Oncologist has decided to take me off  chemo and wait for a trial  or anything else that may help. He then refered me to Stanford and I saw Dr Karyn Goodman Feb. 14, 2006 for evaluation. She said they thought they could help by using a special radiation technique to get most of the spots in my liver and bile ducts.  Needless to say, I was very excited to begin treatment but now my insurance company say they will not authorize  the treatment. They think I should continue treatment here in Oregon. I have exhausted all my options here in Oregon and Stanford is the last hope I have. Has anyone out there been confronted with a situation like this?  Can the insurance carrier really stop a needed treatment that may save my life. I have put in an appeal , but no one seems to want to talk to me. Any advice or suggestions  will be greatly appreciated.  My e-mail address is:  mzpatzee@yahoo.com

  • evan14
  • Senior Member
  • Offline
  • From: Wisconsin
  • Registered: Mon, 16 Jan 2006
  • Posts: 68

Re: Insurance problems

These insurance companies should not hold the key to whether or not a person survives or gains valuable time. Mine tried to deny payment for 6 additional days my wife spent in the hospital

  • Registered: Fri, 13 Jan 2006
  • Posts: 4

Re: Insurance problems

Thank you for writting and sharing some tips with me.  The insurance company told me today that they are upholding the denial because they think the same treatment is available here in Oregon. Well I called OHSU and was told they do not do the type of  treatment that I need.  I think it should be against the law for them to be able to jack us around like they do. The are only adding to my misery and sometimes I dont think I can take much more.  Thank you again for replying. I deeply appreciate all the help I can get.        Pat

  • From: Ouray, Colorado
  • Registered: Thu, 23 Feb 2006
  • Posts: 85

Re: Insurance problems

I am hoping to enter a clinical trial and my doctor is writing a letter to the insurance company as the clinical trial doesn't pay for all the tests and exams associated with the trial.  If you can get your doctor to write a letter that may help.

I had a friend with some unusual medical problems and she had seen every possible specialist in Colorado and they concluded she needed to go to Mayo Clinic.  The insurance company tried to say she could get the care in Colorado, but her primary physician intervened and she was able to go.  Turns out she has some unusual allergies.

My insurance company tried to deny my last PET scan and I called and talked personally to the man who made the decision.  I told him that I wasn't trying to harass him, I only wanted to understand the rules about PET scans so I could  manage my health care.  My oncologist had gotten rather irked with this guy and I think yelled at him on the phone.  The insurance company actually came back and said they would pay for it as they found a loop hole in the system.

Do you have a state insurance board that you can call?

It is criminal to be held hostage by the insurance companies when time is of the essence.

If you have to pay for the treatment yourself, you may want to talk to the hospital about how to set up a financing plan.  Have you checked with the American Cancer Society about any possible help or suggestions they might have?

  • Registered: Fri, 18 Aug 2006
  • Posts: 5

Re: Insurance problems

i know that at md anderson they have a case worker who handles all insurance claims they are assigned to you the moment you become a patient thankfully we did not have to deal with that aspect.  the rest of the time the insurance company we had was unicare and they assigned a case manager to my husband and i was able to speak directly to that person every time and have many questions answered and taken care of

  • Registered: Fri, 06 Jan 2006
  • Posts: 258

Re: Insurance problems

Keep knocking on the door.  You have to keep making phone calls until you reach a decision maker and then you've got to plead your case.  Your Dr. must get involved as well.  Make sure he is making the necessary calls and faxing letters or whatever the insurance company needs.  Just keep at it.  Ask them if they have an advocate program (someone who could be assigned to your case to look things over and take the time to explain things to you and go directly to the insurance company when things like this happen).  If you work for a big company, your company may have an insurance advocate that you can work with.

Stacie

7 Reply by wilder1run (edited by wilder1run Sun, 25 Feb 2007 16:09:10)

  • Registered: Fri, 23 Feb 2007
  • Posts: 10

Re: Insurance problems

Our insurance company is AETNA, it changed from United Health Care on January 1.  I just discovered that AETNA is refusing to pay for the tests the Dr. is ordering to track my husband's tumour markers.  What test are being used and paid for?  If you would share what they are, I would appreciate that. I'm trying to find out if my husband's Dr. is ordering the wrong test, because it seems to me that testing for tumour markers is something a lot of people are doing.  I'm confused about why United would see them as necessary, and pay for them, and why AETNA doesn't think that we should be testing for tumour markers.  I've contacted the company advocate, but they have not returned with any information.

The test in question is CA19-9.

  • Registered: Fri, 30 Jun 2006
  • Posts: 30

Re: Insurance problems

My husband Ken passed away in Dec 06 from CC. I am a Pediatric
RN and so  I deal with insurances all the time.  Fortunately, we had great insurances for Ken- Cigna and HHP.  There were lots of times during Ken's treatments that I felt we were out in "space" without any help.  Besides the fact that he had a rare cancer that no  one appears to know how to treat,  I felt like we should have had a social worker on his case.
We were not introduced to a social worker until Ken was placed in Hospice.There was nobody to help us if we had questions about finances, insurances, etc.  I found out on a fluke that with the diagnosis of CC you are eligible for Social Security Disability.  You do have a 6 mo waiting period but it sure helped us when Ken was no longer able to work.  Also, if you are on SS Disability for 2 yrs, you are automatically signed up for Medicare.  Ken only lived with his disease for 18 months but I did tell a friend about the Social Security- his wife has Colon Cancer- and they were able to collect it retroactive to her disability date.  I think  the Social Security is a great help.  If you have minor children, you also get SS Disability per month for them.

As far as the insurance goes, unfortunately, what we do as health care professionals is dictated by them. Although, There is always a chance to fight a denial.  The first step would be is to have your Doctor in Oregon write a letter to the ins co stating that the required treatment is only available in certain states and Stanford is the closest center for you.

Dr Karyn Goodman is a wonderful doctor!  She did the Sirspheres treatment on Ken which worked.  Unfortunately, at our 3 mo recheck, his tumors were back on the other lobe. He chose at that point not to continue with any treatment,was given less than 6months and had a nice quality of life for 4 months.

I have this horrible pain in my heart from missing him but I know he is in a great place!

Terri Hembree

  • Registered: Mon, 15 Oct 2007
  • Posts: 14

Re: Insurance problems

Hello,

My father recently had the SIRT - Y90 treatment, and it seems to really be working well.  The vessels that feed the tumors in his liver are shrinking, therefore decreasing the chances of the tumors getting any larger.

Here's the problem.  My dad has Blue Cross.  They initially denied coverage of this treatment stating it was "too new" of a treatment and that there weren't enough successful cases to prove it is worth is basically.

The doctors told my dad to go ahead with the treatment, pay for it, then they would send a letter to the isurance company appealing the denial in order to get my dad reimbursed.  My dad paid close to $100,000 out of his pocket with the expectation of reimbursement.

Yesterday, we received the second denial letter.  This letter now states that we will have to submit an appeal to the Insurance Commission.  It also states that he is only eligible to even be considered to an appeal if he would have died without this treatment.

I am desperately trying to research or locate any cases where Blue Cross, or any other insurance company, has covered this treatment. 

I feel for you, as I know the struggle you are going through.  You just have to keep fighting the fight.  I know I will.  I'm not going to stop until I get the answer that I'm looking for.  It's hard enough for my parents to deal with the pain and heartache that this disease brings...it's just not right for insurance companies to make the struggle twice as hard.

Do not give up!

Nicole

  • Registered: Thu, 16 Nov 2006
  • Posts: 171

Re: Insurance problems

Hi Nicole,

I had the SIRT treatment in June and it was covered by my HMO with Blue Cross of California.

G

  • Registered: Mon, 15 Oct 2007
  • Posts: 14

Re: Insurance problems

Hello Glightfoot,

Thank you so much for your reply.  If you don't mind me asking, what state are you in?  Also, was there anything special that you did to get Blue Cross to cover the treatment?  Any information that you can give me is so greatly appreciated!

Thank you,
Nicole

  • Registered: Thu, 16 Nov 2006
  • Posts: 171

Re: Insurance problems

Hi Nicole,

I'm in California and get the insurance through my employer. My cancer treatments are at UCSD -- the John and Rebecca Moores Cancer Center.  I didn't do anything special to get the SIRT treatment.  My oncologist recommended that I go see the interventional radiologist, which I did.  And after pretreatments, I had the procedure.

I hope that you  can may some headway with your insurance company.

G

  • Registered: Mon, 15 Oct 2007
  • Posts: 14

Re: Insurance problems

G,

That is so crazy!  My dad also received the SIRT - Y90 treatment at UCSD (Dr. Rose) where he has been a patient since his diagnoses in 2005.  What a small world!

Since we have already received the second denial letter, we are now forced to file a formal appeal.  In an effort to show that Blue Cross has paid for this treatment in the very recent past, would you mind if my parents used your case as a reference in their fight?  Here is my direct email address so that you may contact me there in order to maintain privacy.

nicole5150@gmail.com

You have no idea how excited my parents were when I told them that I found someone with Blue Cross who not only had the treatment and had it covered, but also had the treatment at the same facility. 

You have been extremely helpful, and anything that you can provide is appreciated more than you know.

Thank you again,
Nicole