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WTH is wrong with these insurance companies??
Nie
Posted: Friday, July 6, 2012 12:02 PM
Joined: 5/30/2012
Posts: 66


Yesterday I got denied by Anthem Blue Cross HMO for my PET and SPECT scans.  After many confusing phone calls between me, my PCP, Blue Cross and Healthcare partners, I finally got the reason.

PET and SPECT scans are considered investigative and experimental as they relate to EOAD.

What?  ummm What???   Is that not the dumbest thing you have heard?  I told them, well yes I suppose if a diagnosis needs to be confirmed or ruled out  there is investigation needed...

I asked them what tests ARE allowed to help diagnose or rule out EOAD and they said they didn't know.   So..they know whats not allowed... but not what IS.  

I was so mad.'

I told them "You know, I have a memory issue, Im not stupid."    Hung up before I started swearing like a truck driver.  

So, I'm not sure where this leaves me.  I left a message for the ALZ neurologist and asked for any next steps.  I'm struggling so hard to keep this horrid job I have for the medical and it doesn't seem like it is going to give me what I need.  

Any thoughts?

~  Taking a deep breath, 

Nie
Iris L.
Posted: Friday, July 6, 2012 12:49 PM
Joined: 12/15/2011
Posts: 18519


Nie, I had a SPECT scan done in 2003 which was covered without complaint.  The reason was to discover lesions that might be caused by lupus.

In 2007 I had a PET scan that was done without charge to me because I agreed to be a control patient for a brain cancer study, so my insurance was not involved.

Every insurance co. has an appeals process.  I suggest you contact them and tell them why you need a PET and SPECT and what medical information does your neurologist have to provide to get them covered.   

You can call the Helpline and ask a Care Consultant if they have any references regarding the necessity for PET and SPECT in the diagnostic process of dementia to help you in your appeal.

You can also post on the Caregiver Board.  Some of them have more experience in dealing with insurance companies and they may have more advice for you.

Good luck.

Iris L.


Nie
Posted: Friday, July 6, 2012 12:55 PM
Joined: 5/30/2012
Posts: 66


Thanks Iris, I will!   Nie
PaulC
Posted: Friday, July 6, 2012 2:49 PM
Joined: 6/13/2012
Posts: 29


I recommend a complete neuropsych exam (takes around 8 hours). Scans are still limited in what they can see. CAT, PET, and MRIs showed nothing for my wife 2 years ago, but the neuropsych picked up many issues.

I strongly recommend seeing a neurologist who is a dementia expert. Dementia is difficult to diagnose in many cases, currently you need an autopsy for a definite dx, and many neurologists are not familiar with dementia, especially forms other than Alz.


Nie
Posted: Friday, July 6, 2012 3:16 PM
Joined: 5/30/2012
Posts: 66


PaulC wrote:

I recommend a complete neuropsych exam (takes around 8 hours). Scans are still limited in what they can see. CAT, PET, and MRIs showed nothing for my wife 2 years ago, but the neuropsych picked up many issues.

 

I strongly recommend seeing a neurologist who is a dementia expert. Dementia is difficult to diagnose in many cases, currently you need an autopsy for a definite dx, and many neurologists are not familiar with dementia, especially forms other than Alz.

 
 

Hi PaulC

 
Currently I am seeing an Neurologist with a speciality in Alzheimers.  I am have had multiple "memory tests" but not the super long one.  I am still waiting to see if the insurance will cover a neuropsychologist.  The testing at the current neuro office is about 1/12 hours done by computer.  The Dr said that he didn't feel that would be enough, therefore the request for the referral for extended testing. 
My MRI only showed one side of my brain is a bit smaller (maybe someone dropped me on my head when I was a baby  ) and some "age related" hyperintensities.   That first neurologist was not good.  He brushed me off.  I'm hoping for better results with the specialists since he said he would be my advocate.  

Iris L.
Posted: Friday, July 6, 2012 8:55 PM
Joined: 12/15/2011
Posts: 18519


I'm sorry, Nie, I thought you had had neurocognitive testing.  It is very important. 

When I had my first neurocognitive testing in 2003, I was told insurance would not cover it, and I paid over $2,000 in cash (I don't remember the exact amount). 

In 2008, at a different neuropsychologist's office, I was told Medicare and my private insurance would cover.  I don't remember my co-pay then but it was a reasonable amount.

Randy has a good idea, to be a bit more assertive with these people (the insurance company).  I don't know about the cussing, though.  It seems sometimes like they keep putting people off in the hope they will get discouraged and stop asking for help.  That's not good at all.

Iris L.

dayn2nite
Posted: Friday, July 6, 2012 10:14 PM
Joined: 12/18/2011
Posts: 3097


Nie, you'd do better to move in the direction of neurocognitive testing right now.  You can appeal the denial of the scan, but they are being truthful when they say it is an experimental or investigative method of diagnosing EOAD.  The best you can hope for as far as imaging goes from the insurance companies right now is an MRI or CT scan, neither of which will show anything but atrophy (which is generally described as normal for age) or stroke.

 

Until an imaging method or lab method is accepted as a basic standard of care, insurance companies will not cover a test, especially now.  PET scans do not have that designation right now.


eaglemom
Posted: Friday, July 6, 2012 10:22 PM
Joined: 3/7/2012
Posts: 2775


Its a constant battle to receive the testing needed.  I will say when the neurologist and neuropsy both ordered the PET scan insurance decided they would cover it. I also called insurance and explained to my best ability that if it were someone in there family it would be covered.............sadly that line works a lot.

You need to get all of the testing available to further accurately diganosis you.  eagle

 


Mimi S.
Posted: Saturday, July 7, 2012 10:12 AM
Joined: 11/29/2011
Posts: 7027


Hi , Hopefully insurance companies will soon approve the special PET tests with the Pittsburgh compound and also the spinal tap tests. The regular MRI is used to rule out hydrocephalus. The functional MRI may show something.

I may sound like a broken record, but I truly believe that getting The Alzheimer's Action Plan by Doraiswamy and Gwyther of Duke University will help all understand what is truly necessary, not just the gold standard, to make an informed diagnosis.


RebeccaJ
Posted: Saturday, July 7, 2012 3:19 PM
Joined: 4/19/2012
Posts: 83


I, too, was told that the scans wouldn't help because of the same reasons. I asked if there was any way to test for my disability and they flatly said no, just the neuropsych testing is necessary. My dr said the neuropsych and symtoms tell enough of the story to diagnose me. So here I sit. There is alot of talk about meds, but the dr's in our area don't put much credit to them because there is no cure. I had great cognitive training (occupational rehab) but no hope of having a pill to help. I do listen to everyone's wring about their treatments and wonder how much is placebo. If you think it is helping, it will. Get the long neuropsych and go from there. Bottom line is you have a list of symptoms and after all the testing to rule out disease processes, you still have all the symptoms. I don't want to be driven crazy by having to micro manage a diagnosis when there is no cure. To each his own, but relaxation is a key component to performing better
Myriam
Posted: Saturday, July 7, 2012 4:07 PM
Joined: 12/6/2011
Posts: 3326


My understanding of the memory medications is that they do work, but only if started in the early stages.
nomemo
Posted: Saturday, July 7, 2012 4:59 PM
Joined: 3/21/2012
Posts: 439


i had the spect only as a confirmation as to what was suspected, frontotemporal dementia.  i was lucky, my highmark bluecross/blue shield paid for it.  prior to having the spect, i had already had the loooong neuropsych, as well as cognitive eval, cat scans and mri.  my neurologist in my town had diagnosed me with dementia nos, but had his suspicion as to ftd, so he sent me for a second opinion to a renown neurologist in a bigger city.  it was that neurologist who sent me for the spect.  2 weeks later at that neurologist's office i got the confirmation of ftd.  the moment he looked at the results sent from the hospital onto his computer, he called me and my cognitive therapist (she went with me) over to look and said..."yes, there it is, plain as day".  we had a very frank discussion as to what this involved and what i should be doing as far as "getting my affairs in order".  he, as well as my own neurologist, wanted me to stop working and apply for ssdi, but i resisted..mainly out of fear and then there was the financial aspect, it's only me and i'm my sole source of support.  so....i went on working for another year.  luckily, my director was also my cognitive therapist and told me that i would not be forced out, that i would make the call on my own.  i did when it got too difficult and i was making way too many mistakes, sending erroneous and incomplete reports to our corporate office.  i also was having outbursts at the office and my personality was changing all of the time.  i wanted to go before corporate told me i had to go.

 

that was a scary time, 2 years ago, but, like so many of us, i just "keep on keepin' on"!


RebeccaJ
Posted: Sunday, July 8, 2012 6:10 AM
Joined: 4/19/2012
Posts: 83


Nomemo,

I am so happy to hear your story...though I so wish you didn't have to have to deal with it. In September I will have new medical insurance and I am planning to go to a teaching university, 1.5 hours away, to get more evaluations. My husband has to take off work to drive me and that has limitations. I can think of only one other person to help. I guess if I made a list I could think of more that I could impose upon   Maybe if I get a doctor at the school, they could work one one closer to me.

I am so surprised to hear everyone on medicine. My friends in the ALZ group have the same experience as me with their dr's and meds...it isn't just me being stubborn.

 


nomemo
Posted: Sunday, July 8, 2012 12:33 PM
Joined: 3/21/2012
Posts: 439


rebeccaj - i come from a small town and i consider myself to be so lucky to have had everything fall into place as they have....re: doctors, insurance, remediation, meds, etc.  i honestly don't know how that happened!  even the fact that i haven't had medical insurance since i retired 2 years ago hasn't really been an issue because my drs., hospital and patient assistance from pharmaceutical companies have helped me.  drug companies SHOULD have assistance programs with all of the money they get!  but i digress!  i am truly blessed.  i, too, don't drive.  i have to count on someone to take me to my appts.  i did try riding public transportation a couple of years ago, when this all started, but it was a nightmare for me...i couldn't get off that bus fast enough!  not even sure i got off at the right place!  so....like you, i hate to impose on other people.....but they saw my need and offered before i had a chance to ask.  not that it made me feel any better initially, and i am still a work in progress....please don't be so hard on yourself....we're ALL a work in progress!!  and i'm sorry that you, too, are going thru what you are.  i remember those feelings all too well.  but i'm glad that you're here and we're here for you!

 

blessings, friend!


Iris L.
Posted: Sunday, July 8, 2012 3:31 PM
Joined: 12/15/2011
Posts: 18519


nomemo wrote:

.  i did try riding public transportation a couple of years ago, when this all started, but it was a nightmare for me...i couldn't get off that bus fast enough!  not even sure i got off at the right place! 


Nomemo and others who don't drive, see if your county has transportation for the disabled.  My county has ACCESS transportation for the patient plus a caregiver if a companion is needed.  You have an memory/cognitive impairment and cannot use public transportation because you have trouble understanding how to navigate.

DIsabled transportation is not only for those in wheelchairs and the blind.  It's for anyone who can't handle public transportation.

The geriatrician I consulted in 2009 got me signed up for disabled transportation.  I knew nothing about it at the time.

Also, the senior center at one of the local hospitals provides free transportation to patients needing an appointment at the hospital campus including visiting doctors at the medical office building. 

Iris L.

nomemo
Posted: Sunday, July 8, 2012 5:23 PM
Joined: 3/21/2012
Posts: 439


iris - good advice.  my community does have that type of transportation; however, no companion as budget cuts forced discontinuance (is that a word?) of that part of the program.  if i could go without a companion, no problem.  problem.  i need someone to go with me.  but, for now, it seems to be working out.  i'm trying more and more not to let my pride get in the way.  sometimes i think my pride is as bad as my ftd!  anyone know what i mean?  i know what i want to say, but i don't think it's coming out clearly today.
Iris L.
Posted: Sunday, July 8, 2012 5:45 PM
Joined: 12/15/2011
Posts: 18519


Nomemo, we have to accept that our lives have changed and will never be "normal" again.  We have to make accommodations so that we can live and enjoy our lives. 

Iris L.

nomemo
Posted: Sunday, July 8, 2012 9:55 PM
Joined: 3/21/2012
Posts: 439


iris - you're so right.  we have a "new normal" now.  thanks for the advice.