Family history, will insurance cover?

alto
alto Member Posts: 233
edited September 2020 in High Risk for Breast Cancer

I have a friend with a family history of breast cancer. She believes her insurance will not cover the cost of a mastectomy and reconstruction. I am asking these questions on her behalf:

Are there any standard guidelines insurance companies use to determine what is optional vs. necessary surgery in this situation? If family history or genetic testing show a certain result, do they have to cover surgery?

If she has concerns about genetic testing impacting her negatively by becoming part of her health record, is there a way to prove, by the number of relatives she has who have died from the disease, that she qualifies for preventative surgery?

Who should she consult to figure out what her options are? Should her doctor know? Should she contact a hospital cancer center and speak with them or their finance office, or even the American Cancer Society?

If her insurance ends up denying her, does she have other options so she's not paying out-of-pocket for surgery and reconstruction?

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Comments

  • gb2115
    gb2115 Member Posts: 1,894
    edited April 2019

    I would probably start with her calling her insurance company to discuss.

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  • edwards750
    edwards750 Member Posts: 3,761
    edited April 2019

    My mother had breast cancer. My sister and I both have it as well. Family history had nothing to do with whether either of our insurance companiespaid or not. It never entered into the discussion. I have BC/BS. My sister had Medicare as her primary and a supplemental policy.

    I’m sorry your friend got the dreaded DX but there are reasons to be optimistic about treatments, etc.

    Good luck to your friend. She’s blessed to have a friend like you.

    Diane

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  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited April 2019

    It varies by company. As an example, here is Aetna's guidelines:

    http://www.aetna.com/cpb/medical/data/200_299/0227.html


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  • vlnrph
    vlnrph Member Posts: 1,632
    edited April 2019

    Your friend could ask her doctor for a referral to a genetic counselor. These master degreed professionals are in the best position to analyze family history, suggest who should be tested and help interpret results.

    Anyone thinking about looking for a possible inherited mutation needs to review their life, disability and long term care insurance policies before sending in a sample. We have protection from discrimination in health coverage but not those other areas. There was federal legislation known as GINA passed several years ago.

    Denials can be appealed. I won on a few different issues when the company was not following their own guidelines and also because they did not honor the prior authorizations they had given!

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  • alto
    alto Member Posts: 233
    edited April 2019

    Thank you for the great responses. Since she has the strong family history but no diagnosis, we were having trouble figuring out who was the right person to go to to make a case for the surgery (oncologist, surgeon, genetic counselor), and what +/- each route might involve. I appreciate the support, leads and cautions.

    It does seem to me the insurance company is not following their own guidelines (found policy info online that said multiple blood relatives with bc in direct blood line was enough) but I've also heard this insurance company skimps on coverage, so I wasn't sure how to advise her to move forward to get the prophylactic surgery she wants

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  • alto
    alto Member Posts: 233
    edited July 2020

    I wanted to say thank you for all the advice. I'm posting this a bit late - but my friend finally got her surgery.

    Her insurance had initially told her it was an elective surgery and they would not pay. Her family history was not enough. She ended up having to get a genetic test to prove she needed the surgery (she was reluctant to do this because of the impact on life insurance, etc.), but after that her surgery was approved and she was able to go forward with it and is doing very well, and I know it was a big relief to her to reduce her risk.

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  • alto
    alto Member Posts: 233
    edited September 2020

    She had to get the genetic testing. They wouldn't do anything without that, despite the fact she had several female relatives in her bloodline that had died of breast cancer. I assume if the test hadn't come back positive for the genetic link, they wouldn't have paid for the surgery. She'd been trying to get the surgery for about a year, but they wouldn't do it without positive results on the genetic test. Waiting for those results was tough - getting the testing felt like a gamble. In her case, even though she got some bad news (positive genetic link), she got the results that got her the surgery she wanted.

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  • AliceBastable
    AliceBastable Member Posts: 3,461
    edited September 2020

    Just because there are relatives with cancer, doesn't mean it'ss genetic. It's actually a pretty small percentage, if I remember correctly. But it's good to get tested IF there's a chance.

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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited September 2020

    I agree with AliceBastable. With the currently known genetic mutations that may predispose one to bc, and we’re way beyond BRCA genes now, I believe only about 15-20% of dx’ed bc is genetically tied. That doesn’t mean there aren’t other genes that have yet to be identified. I have a paternal grandmother who diedof bc and a sister who died of a uterine sarcoma. We are also of Ashkenazi descent which puts us at higher likelihood for the BRCA genes. I have had all the tests currently available. The results? Bubkes as we say in Yiddish, nothing.

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