BRCA-Multi-Gene Panel Test Coverage Denied/Advice Needed

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Girl53
Girl53 Member Posts: 225
edited July 2016 in Employment, Insurance, and Other Financial Issues

Anyone else, due to family history, have their onc order a BRCA test or entire multi-gene panel test...then have insurer deny coverage?

The reason given, I think, is no proof of medical necessity by oncologist who ordered test. A genetics counselor separate from onc did my "workup" and prepared both a schematic and a list of family cancer history, which is extensive. As I recall, I gave this to onc months ago.

Should I contact onc's office and ask them to use this info as evidence of need for test? I can't imagine there are many people whose doctor's order the test and then don't make a case for it with insurer? All tips appreciated.

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  • LisaAlissa
    LisaAlissa Member Posts: 1,092
    edited December 2015

    Definitely consult with your onc's office. Find out what they said to insurance company. And find out what their experience has been with insurer denials of coverage. And also check with your genetic counselor. S/he may have experience about what gets covered. But also check with the testing company. They often have very helpful things to offer when trying to persuade insurance company to cover.

    Once you find out what has been submitted, they you can start strategizing how to appeal the denial.

    HTH,

    LisaAlissa




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  • Maureen1
    Maureen1 Member Posts: 614
    edited December 2015

    You may want to check this forum out...https://community.breastcancer.org/forum/71/topics...

    There are several of us who have had genetic testing thru this company "Color Genomics" at the website www.getcolor.com. They do the 19 gene panel but the cost is only $249 total - they do not bill insurance so they do not need approval or a physician order. The price includes genetic counseling before and after the test is done. I know for me it was a very easy process, took only about 4 weeks total, and the company was very responsive and helpful.


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  • lintrollerderby
    lintrollerderby Member Posts: 483
    edited December 2015

    Hi. You should read the specifics of your insurance coverage to read what their stance is on genetic testing with regards to your individual policy. If it were me, I would read over the coverage as well as contact the MO's office for assistance, or perhaps call your insurance and the MO's office and get a contact person at each who can facilitate the process.

    I completely understand if you don't want to answer, but you mention having a strong family history. If you're comfortable answering, how many relatives were diagnosed? What ages were they? Were they all on the same side of your family? Many insurance companies have specific criteria for what constitutes a strong family history which would qualify for genetic testing. This can often be expanded if the MO engages in a peer-to-peer conversation with the insurance provider's physician.

    Also, if you're wanting to test through Myriad and are unable to get the insurance to budge, they do offer patient assistance programs to make testing more affordable.

    Good luck and I hope you're able to get tested...and that it comes back negative. I had no family history and was completely floored that I carry a BRCA1 mutation.

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  • 3-16-2011
    3-16-2011 Member Posts: 559
    edited December 2015

    You can check with your genetic counselor often they have experience in dealing with. insurance companies. Good Luck

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  • Girl53
    Girl53 Member Posts: 225
    edited December 2015

    Thanks to all for helpful info. I have already had the multi-gene panel test, which came back negative. Was tested, through Myriad, for BRCA and a number of other genes, due to strong family history. Because of that history, it didn't occur to me that coverage might be denied. I didn't read specifics of my policy before proceeding....You know what they say: to assume makes an "ASS of U and ME."

    Will take your good advice and reconnect with genetics counselor who made my schematic, and talk with onc's office. I have numerous relatives with breast and/or ovarian cancer (including two clusters...though only two of these were dx'd under age 50), including mother, paternal grandmother, and many (sad) on father's side of family. Maternal grandfather had prostate cancer. Maternal grandmother had lung cancer. Paternal grandmother's family, in addition to BC, also riddled with gastric and other cancers. Genetic counselor made it sound like a slam-dunk.

    My onc's office has dropped the ball on some other issues, too, so it wouldn't be surprising to learn they hadn't been thorough in providing Myriad with evidence of test necessity.

    Thanks again, all. Really appreciate it.

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  • Girl53
    Girl53 Member Posts: 225
    edited December 2015

    Lint: Just wanted to say wow...no fam history, and BRCA-1 positive? Hope things going okay. I had sort of the opposite situation...extensive family history but negative for that gene.

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  • LisaAlissa
    LisaAlissa Member Posts: 1,092
    edited December 2015

    Hi again, Girl53. It's not Myriad who needs to be persuaded, it's your insurance company.

    Myriad doesn't think there needs to be "medical necessity" to use their services, just a desire to see the results. It's been a long time since I dealt with them, but they have a good idea of what will/won't be covered by each insurer. And if you don't present with the "right" info, they just want to make sure you're prepared to pay, if/when coverage is denied--before they run tests on the submitted sample. They were helpful in getting coverage approved for me.

    HTH,

    LisaAlissa

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  • Girl53
    Girl53 Member Posts: 225
    edited December 2015

    Lisa: Sorry about typo...Of course, I meant insurer needs evidence of necessity, not Myriad.

    Am now considering how to do the appeal effectively. Will probably contact the genetics counselor I worked with and get copies of the family cancer schematic she made me, and either give this to my oncologist to help make the case, or send it to my insurer myself. I'd better start by reading the fine print about who's and what's of the appeal process. Am also hoping counselor has worked with my particular insurer before and has some tips for getting coverage.

    Again, my impression in talking to counselor initially was that my case was one of obvious need for the test. If there had been any question about this, I would have explored it at that time. This is a learning process, isn't it?

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  • LisaAlissa
    LisaAlissa Member Posts: 1,092
    edited December 2015

    Nokidding. ::shakes head:: Everything is harder than it should be...

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  • lintrollerderby
    lintrollerderby Member Posts: 483
    edited January 2016

    Girl53: I apologize for not replying sooner; I was on vacation and hadn't logged in while away.

    I'm glad to hear that you're negative for a BRCA mutation.

    Yes, it took me off guard to learn that I have mutation. My only child, a daughter, is also positive. Both of my parents were already deceased by the time I was diagnosed with breast cancer, so neither of them could test; however, I've realized that my father was almost certainly the carrier from whom I inherited the mutation. He came from a very small family with few females and so the mutation was able to hide. He died from suspected pancreatic cancer, which is also linked to BRCA mutations.

    I think it is ridiculous that your MO's office was willing to let you wait until February to discuss your results.

    I apologize again for the delay. If I can help in any way or if you have questions, please let me know.


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  • Girl53
    Girl53 Member Posts: 225
    edited January 2016

    After getting good advice on this thread -- thanks to you all -- I called my insurer. Was lucky to get a fabulous customer service rep who told me that, though I'd gotten full-on denial letter, insurer just needs a letter stating medical necessity, and that claim can simply be re-submitted (likely don't have to go through formal appeal process). What a relief! Called MO's office to let them know, and they said they'd "call me back tomorrow." This was more than a week ago. I know these offices are probably backed up due to holidays, but it's still irritating to have a $6,000 unpaid bill hanging over my head. After months-long BC ordeal with genetic testing, delays in appointments and treatment decisions, etc., another unresolved factor is not welcome.

    Just mentioned on another thread that we had a death in family this week and am planning a funeral. And I had cataract surgery Thursday. Am feeling emotional and kind of old (I am only 53)...And while I'm fit, trim, and usually eat healthy, have been so off-balance that I'm on my third batch of Tollhouse cookies this week. What is it about warm cookies and cold milk that is so comforting? Think I'll wait a little longer to return to my healthy diet....

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  • vlnrph
    vlnrph Member Posts: 1,632
    edited January 2016

    Chocolate is a well known treatment for many problems (until it creates more!) - you certainly have lots going on.

    I've also been away from the boards over the holidays but am now hibernating indoors due to single digit temps outside and have time to catch up...

    I was successful in my appeal of genetic testing denial in 2015. Ambry had guaranteed that my out of pocket cost would be just $100 so I really didn't have to pursue the issue however I had appeared before the insurance company committee on a previous occasion and was not intimidated by their methods.

    Lintrollerderby, screen name because of the cat in her picture, has good advice about reading your policy. I was able to point out at the review meeting with their doctor and lawyer that, although the BreastNext panel was run, we were only billed for BRCA analysis for which I met criteria. Let us know how your situation turns out.

    Responding here made me realize they have now withheld payment for several months which means my next step may be to file a complaint with our state commissioner. Those agencies can help obtain results at least for some people, depending on where you live, when there is trouble getting coverage for contracted benefits.

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  • 6feetover
    6feetover Member Posts: 320
    edited June 2016

    *BUMPING* this topic to share my tale of woe. My insurance company recently sent my DH and me an EOB letting us know that they're denying coverage for the extensive genetic testing that I had done last year (my onco team wanted and needed the results in order to determine the best course of action to tackle my TNBC treatment and surgery)–to the tune of $20,000–because the genetic testing provider is OUT OF NETWORK. How convenient for the insurance company, eh?! Dunno what we're going to do.

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  • Blueorange
    Blueorange Member Posts: 76
    edited July 2016

    I was just denied coverage for genetic testing as well...I had been waiting for the results to help with the surgery and treatment decision...

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