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PCR Denial


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#1 lsburris

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Posted 27 August 2014 - 02:18 PM

Hi All -

 

I am a newly diagnosed Ph+ CML patient <6mos.  Treatment therapy is Tasigna.  I am a retired military so I have Tricare as my insurance.

 

Since before diagnosis neither my oncologist nor I have had any luck getting insurance approval for a PCR test.  Tricare says the test is "experimental" and thus the denial.  Appeals have been useless.  My Congressman is looking into the situation but I do not hold out much hope of a resolution.

 

Has anyone else had this type of problem with their insurance?  Recommendations or suggestions?  If I understand correctly the cost of a PCR is about $1200-1500.  I could afford to pay for maybe one but this would not be doable 3-4 times per year.

 

Novartis is currently offering free RQ-PCR tests but just not for patients with "government" provided insurance so I am out of luck there as well.

 

I know that BMB is an alternative that is covered by insurance but after my last experience I do not relish the thought of another anytime soon.

 

What is the Standard-of-Care for CML patients when it comes to monitoring?

 

Thank you for any help that might be provided! 



#2 Marnie

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Posted 27 August 2014 - 02:55 PM

PCR test is not "experimental."  It is standard care for cml.  I think someone else on the forum went though this same thing awhile back.  I wish I could tell you how to resolve the issue.  I've spent many hours on the phone with my insurance company and things have always worked out, but it sure is a pain in the neck.

 

I would think that your oncologist should be the one to deal with this.  I would assume that NCCN guidelines use PCR measurements, though to be honest, I haven't looked at the guidelines in quite a few years. 

 

The squeaky wheel gets the grease, so keep calling your doctor until this is resolved. 

 

Good luck,

Marnie



#3 Trey

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Posted 27 August 2014 - 03:05 PM

If you have a military retirement you can always go to a military base to have the PCR done for free.  Military labs do BCR-ABL PCRs all the time.  But in the meantime I assume you have been having FISH tests done?  If so, they are actually better until they become zero, then PCR must be used after that.

 

The reason Tricare is saying PCRs are "experimental" is that PCR manufacturers have a legal disclaimer stating "For Research Use Only.  Not for use in diagnostic procedures.." or some similar statement, as on the brochure below (under the LightCycler name on page 1):

http://www.roche-dia...-Fact-sheet.pdf

 

But every lab in the world ignores that statement.  And PCRs are universally acceptaed as the only way to monitor minimum residual disease levels. 

 

Tricare is wrong on this.  Almost every insurance company covers PCR tests.  You need to go talk to your Tricare representative. 



#4 jjg

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Posted 27 August 2014 - 08:23 PM

In addition to the PCR not being experimental, the amount they are charging is really inflated. I'm in Australia. The lab that does the test bills the government health care system. The amount the lab charges is A$196.35 (~US$183). This is only to process the blood there is a separate (lesser) charge for collection. It is supposed to be a full cost recovery system and Australia is hardly a low cost country. It's hard to conceive how the cost could possibly approach US$1200-1500, even with a nice juicy profit margin... gold plated test tubes?


Dx Dec 2010 @37

2x IVF egg collection

Glivec 600 & 800mg

PCRU March 2012

Unsuccessful pregnancy attempt - relapsed, 3 months interferon (intron A), bad side effects from interferon

Nilotinib 600mg Oct 2012

PCRU April 2013, 2 years MR4.5 mostly PCRU with a few blips

April 2015 stopped again for pregnancy attempt (donor egg), pregnant first transfer, 0.110 at 10wks, 2.1 at 14wks, 4.2 at 16wks, started interferon, slow dose increase to 25MIU per wk, at full dose PCR< 1 for remainder of pregnancy

Healthy baby girl Jan 2016, breastfed one month

Nilotinib 600mg Feb 2016

MMR May 2016

PCRU Feb 2017


#5 janne

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Posted 27 August 2014 - 09:20 PM

As I recall,  I think it was someone from Illinois who had Blue Cross Blue Shield. I may be wrong on the state, but it was definitely Blue Cross Blue Shield. I believe this patient finally had a positive resolution with their insurance company. I hope I am remembering it correctly. When I was having FISH tests done, they cost about $1500 each and once I needed to have only PCR testing, the cost dropped to between $600 and $700 (two different labs but also two different tests). Your oncologist needs to go to bat for you as Marnie said.


Dx'd: 8/2008. Started Gleevec 400 mg 11/08. 

Drug break 2011.

Started Tasigna 4/11 450 mg.

Reduction to 300 mg Tasigna 1/2012.

PCRU 9/2012.

12/2012 Detectable.

PCRU 4/2013 through 3/2015. (Reduced to 150 mg 7/2014)

12/2015  ? slightly detectable at probably less than 0.01% per Mayo Clinic.

4/2016 PCRU. Still at 150 mg Tasigna.

 

CESSATION: stopped treatment 7/20/2017. 

9/6/2017:  barely detectable at 0.01%. 

12/11/2017: PCR at 0.09% (did not do the monthly PCR testing.) 

12/18/2017: Inevitable call from Onc. Started back on Tasigna at 150 mg. (Considering Sprycel low dose.) 


#6 lsburris

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Posted 28 August 2014 - 11:55 AM

Thank you all for the advice!  I have a good oncologist, a Veteran himself, and he has continued to fight this battle on my behalf but we keep running in to roadblocks.  During a Peer-to-Peer with my oncologist the Tricare rep all but admitted they know this is an issue but they are pinning the blame on Congress blah blah blah...  I really don't think they are going to budge.  As I have said I am working with my Congressman and my oncologist supplied a whole ream of papers supporting the need.

 

At this point my only choices for my 6-month check-up in October are to pay for the PCR myself or another BMB. 



#7 Melanie

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Posted 28 August 2014 - 12:01 PM

I've had a little experience dealing with Tricare, not for myself, but my father-in-law. I've found them to be extremely accommodating and able to resolve every issue we have had to deal with. There seems to be exceptions to everything and will tell you exactly what you need to provide to meet the exception criteria.

I hope if you give them a call, they are just as good to your needs.
Dx - 05/2011; PCR: 15.04; Fish: 87% Slow responder due to pancytopenia. Current - Bosulif - Nov: 2012, Mar 2016 lowered to 300 mg. 07/16 back to 400 mg. Clinical trial drug, Promacta, Feb 2013, for low Platelets.
CyCR - Aug 2014, Positive for 1 chromosome Sep 2015. PCR: 12.77 in Oct, 2012 to 0.04 (MDA) in Mar, 2016. 4/2016 - 0.126 (Local lab (IS); 05/2016 - 0.195 (local); 6/2016 - 0.07 (MDA); 7/2016 - 0.03 (local) 9/13/2016 - 0.16 (MDA); 9/26/2016 - 0.31 (MDA); 11/2016 - 0.012 (local); 01/2017 - 0.24 (MDA); 04/2017 - 0.09 (MDA); Cytogenetics show der(1:7)(q10;p10)7 chromosome mutation. Repeat of Sep 2015. PCR - 6/2017- 0.035 (local); 10/2017- 0.02 (MDA)




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