DCIS, Bilateral Mastectomy denied by Insurance

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SusanSmay
SusanSmay Member Posts: 13
edited February 2015 in DCIS (Ductal Carcinoma In Situ)

Hey Ladies,

I was scheduled to have a bi-lateral mastectomy today, however, I was told Monday that BCBS of Oklahoma denied the bilateral mastectomy. They did approve a unilateral mastectomy for the breast with cancer (DCIS), but not the removal/reconstruction of the non-cancerous breast, even though there is a family history of breast cancer (maternal grandmother and mother), and I requested the prophylactic surgery because at the end of the day, when this is all over, a double mastectomy with or without reconstruction is what will help me feel the most whole.

My breast surgeon told me it was a federal law that they are to cover surgery of the non-cancerous breast, that in fact she could argue recurrence risks and high-risk statistics all day long and be denied, but if she told the insurance company that it was for purposes of symmetry, they had to approve it. I have contacted the Oklahoma Insurance Commission and received information that states the exact same thing, with more detail, but BCBS still denied the procedure.

My doctor is appealing the decision and has requested to talk to a breast specialist that works for the insurance company and we have decided to hold off my surgery for two weeks in hopes the appeal with be approved by then, but I am wondering if there is anything else I can do or anywhere else I can turn for help? I was told I could submit an appeal as well, but I haven't officially received the letter stating that it was denied, so I am not certain if or how to proceed there.

Has anyone else faced this? and won?


Thanks, Susan

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  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited January 2015

    hi Susan - I have bcbs of ok as well. It seems they have become quite strict in the past couple of years. I had a preventive Bmx in 2012 and they approved it with no issues. I'm really surprised you're having trouble but hopefully the appeal will work. Take care and let us know how everything goes.

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  • Lindab007
    Lindab007 Member Posts: 17
    edited January 2015

    Hi Susan, I work in HR and you are right.......it is a law that they have to cover it. Unfortunately, you are dealing with a for profit insurance company, and they are not going to make it easy. Ask your Dr. To file an appeal, and you file one too! They can't refuse Uncle Sam!

    Good Luck!

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  • DoggieBytes
    DoggieBytes Member Posts: 100
    edited January 2015

    Even with a family history I *think* it is covered if you are actually tested and positive for the genetic markers BRCA 1 and/or 2.

    I had a pre cancerous calcification in my left breast and because I was BRCA neg I did not have a bi lateral. I have a family history too, sister and aunt.

    Have you had genetic counseling and testing yet? My insurance did cover testing for BRCA markers.

    I am sorry you are having to deal with this extra stress at this time. I do know how that feels. I hope this helps.

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  • SusanSmay
    SusanSmay Member Posts: 13
    edited January 2015

    Thank you for the input ladies!

    There was a peer-to-peer between a doctor BCBS and the Nurse Practitioner at my doctor's office and when that failed, the doctor's office submitted an appeal to have a peer-to-peer with a specialist on board with BCBS. I guess what I keep getting hung up on, is no matter what, there is a law that requires the insurance company to cover surgery and reconstruction of the non-diseased breast because the breasts are considered a paired organ (at least in Oklahoma state law). It is LAW!! The woman at the Insurance Commission said she couldn't see how they were getting away with this. I called BCBS personally and spoke with two people, both who said they had no idea what law I was referring to and I cannot get them to help me, all they do is read the notes to me and then tell me they hope it all works out for me. REALLY?! It feels like I am screaming for help at the top of my lungs and everyone in the room is pretending I am not there.

    Oklahoma Insurance Commission told me I could file a complaint against BCBS if they uphold the appeal, and I told that to one of the customer advocates. He advised me to wait before I do anything, to give the two doctor's a chance to sort it out. The problem is, I don't have the luxury of time. My surgery was originally scheduled for 12/17 but has been delayed 3 times, first was a schedule conflict for the PS, second, a UTI, and now the insurance company. My breast surgeon doesn't want to wait any longer. She wanted to proceed with the Unliateral this past Wednesday, but agreed to wait until the 27th of this month to give the appeal process time. But my doctor shouldn't have to file an appeal, she shouldn't have to fight this, this shouldn't be happening at all because regardless, if a woman asks for a bilateral mastectomy for purposes of symmetry (or in my case, my mental health!), it is still law insurance companies cover it and BCBS is breaking that law!

    Its so funny, we are told we have options for breast cancer treatment, but I am beginning to see that really isn't true.


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  • Deirdre1
    Deirdre1 Member Posts: 1,461
    edited January 2015

    Hi Susan,  This is a typical insurance tactic to force your hand into the lesser surgery and then you will think you can't do anything after the fact... but here is what I did...  I paid for it out of pocket and then challenged the insurance company after the surgery was complete but within the timeframe laid out by the insurance company for a challenge... I received every cent the insurance company would have had to pay through an prior approved process!  Now I know this takes a change in perspective that many just can't do or won't do and some might not be able to pay at all however we have to stop looking at our health care as "out of our control"... if it takes a loan I would suggest you do that... if it takes borrowing from a family member do that and hopefully you are in a position to dip into a savings account and pay for it that way... It took 2 months for my insurance company to repay me... They don't want to be pursued for a violation so they tend to pay (I have spoken to several women who went this route because their insurance company wouldn't pay).  And if they don't pay well you have received the medical intervention YOU and your DOCTORS wanted.. that is what I believe is meant by "options"... 

    I know from personal experience that this is hard to do but we have to prioritize our health in much the same way we purchase anything within our households... We need cars or transportation to get to work - so many of us purchase cars and even take out loans to do this, etc. - but we hesitate when it comes to our health.  You do have insurance and they SHOULD to the right thing but that would be a naive way to view this!  Insurance companies will always try to save themselves money...  I hope you get a chance to pursue the health care that you and your doctor's feel is appropriate and that you get the outcomes you want. 

    Best of luck and I hope it all goes well!

    Best,

    Deirdre

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  • Mollymae
    Mollymae Member Posts: 20
    edited January 2015


    Wouldn't it cost the insurance company a lot more if they had to perform the one surgery, and then pay for the second mastectomy once you get it approved? Two hospital stays, 2 operating room charges, double the charges for your surgery etc. etc. I have BCBS of IL and had no problems getting BMX approved. I wish they had to pay for the stress and anxiety that they are putting you through. I believe you will prevail. I'm so sorry that you are going through all of this.

    Good luck

    Marci

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  • SusanSmay
    SusanSmay Member Posts: 13
    edited January 2015

    Marci -- that is exactly what I think!! I am still just stunned at the denial but will keep praying this will get overturned before the 27th.

    Deirdre1 - I am glad you posted about your experience. My husband is in the process of trying to coordinate something like that. He spoke with the hospital, breast surgeon and plastic surgeon about cost and paying in cash or some kind of payment plan. I think everyone is on board with that, but are continuing to pursue over turning the appeal.

    Praying, praying, praying, praying.


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  • Olaf
    Olaf Member Posts: 159
    edited January 2015

    Susan, my situation is a little different. I have military insurance (Tricare) and they say they do not cover nipple sparing mastectomy nor skin sparing mastectomy. I had my surgery (NSBMX) and 4 months later was told they were denying coverage as "it is not an effective therapy for breast cancer." I filed my appeal, turned down. Filed for an appeal hearing. Waiting for the date. I will now start my letters to my Congressman and Senators. I would suggest you do the same.

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  • SusanSmay
    SusanSmay Member Posts: 13
    edited January 2015


    Olaf, I am so sorry to hear that and wish you and the rest of us facing this situation with insurance companies didn't have to go through this.  I am absolutely astounded to find out this is  more common that I realize.  For some reason I thought when it came to breast cancer that everything was going to be taken care of, that there wouldn't be problems like this.  I was told by the plastic surgeon this afternoon to keep bugging the insurance company because its the squeaky wheel that gets the grease, so that is where I am focusing next.   I really hope you win your appeal, I hope that through your letters you will find an advocate to come along side and fight this with you 

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  • Dogsneverlie
    Dogsneverlie Member Posts: 278
    edited January 2015

    This is so crazy.  I have been reading more and more of this.  BCBS turned down fat grafting for me (posted previously) and we did appeals, etc to no avail. 

    I am having a lift and implants done end of February - my surgeon said it WILL be covered by insurance.  Worst case, for my sanity and well being, I NEED to have this corrective surgery done so if for some reason they deny coverage, I plan to make payments.  I have spoken with the person who files the claims and directly with my surgeon and they have said not to worry about insurance, they have to cover it.

    I am sorry for any of us who have to go through this.

    SO FRUSTRATING.

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  • Trvler
    Trvler Member Posts: 3,159
    edited January 2015

    That's so frustrating. I hope since you haven't come back it worked out. Can you find a copy of the law online and SHOW it to them? Once someone was trying to find out something about a sex offender law in my area and I googled it and found it right away. Good luck! Please come back and tell us what happens.

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  • cinnamonsmiles
    cinnamonsmiles Member Posts: 779
    edited February 2015

    IF your insurance will cover the single mastectomy for the breast with cancer, but deny the other breast removal, they have broken A FEDERAL LAW.

    Cancer Rights Act

    The Federal law

    The Women's Health and Cancer Rights Act (WHCRA) helps protect many women with breast cancer who choose to have their breasts rebuilt (reconstructed) after a mastectomy. Mastectomy (mas-tek-tuh-me) is surgery to remove all or part of the breast. This federal law requires most group insurance plans that cover mastectomies to also cover breast reconstruction. It was signed into law on October 21, 1998. The United States Departments of Labor and Health and Human Services oversee this law.

    The WHCRA:

    • Applies to group health plans for plan years starting on or after October 1, 1998
    • Applies to group health plans, health insurance companies, and HMOs, as long as the plan covers medical and surgical costs for mastectomy

    Under the WHCRA, mastectomy benefits must cover:

    • Reconstruction of the breast that was removed by mastectomy
    • Surgery and reconstruction of the other breast to make the breasts look symmetrical or balanced after mastectomy
    • Any external breast prostheses ([pros-thee-sees] breast forms that fit into your bra) that are needed before or during the reconstruction
    • Any physical complications at all stages of mastectomy, including lymphedema ([lim-fuh-DEE-muh] fluid build-up in the arm and chest on the side of the surgery)
    • Mastectomy benefits may have a yearly deductible and may require that you pay co-insurance.
      Co-insurance is when less than the full amount of the bill is paid by
      the insurance company and the patient must pay the difference.

      For instance, the company may cover 80% of
      your expenses after you pay the deductible, leaving you to pay the other
      20%. This 20% is also called a co-payment or co-pay. But
      any required deductible and co-insurance must be like those the plan
      uses for other conditions it covers. So, if a plan pays 80% for hospital
      and surgery fees for an appendectomy (removal of the appendix), but
      only 70% of hospital and surgery fees for breast reconstruction, that
      would violate the WHCRA.

    (http://www.cancer.org/treatment/findingandpayingfo...)

    Please look up that link for the entire law on cancer.org


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  • cinnamonsmiles
    cinnamonsmiles Member Posts: 779
    edited February 2015

    Just wondering.....Are you planning on reconstruction? If you aren't, then to make BOTH sides symmetrical,which is federal law, the other breast would need to be removed. You could always get reconstruction later, right?

    So then it wouldn't be "just" a prophylactic removal, it would be providing symmetry, required by law.

    If having a prophylactic and cancerous mastectomy with reconstruction may provide them with on out, but I am not sure about this.

    Please print out the The Women's Health and Cancer Right's Act and start a folder/file.

    Record all dates, times, names, and what was said with all insurance people. When they say they don't know what law you are referring to, have it handy to rattle off the information.

    Let them know of it, that they are breaking federal law and you are prepared to get a lawyer to handle your case and are prepared to sue and report them to the state insurance commission for breaking the law. Also, always ask to speak to a supeorvisor or manager. Don't mess with the first in line agent you speak to.

    I hope you get things straightened out. I heard a lot of crap out BCBS over the years.

    Try posting this in the forum called

    Forum: Employment, Insurance, and Other Financial Issues

    here on breastcancer.org (https://community.breastcancer.org/forum/113)

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  • Obxflygirl1
    Obxflygirl1 Member Posts: 377
    edited February 2015

    I have Tri Care Standard. They covered a skin sparing BMX in September , 2012, along with reconstruction and nipple reconstruction. My surgeries were at UNC Chapel Hill Women's Cancer Center.

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  • SusanSmay
    SusanSmay Member Posts: 13
    edited February 2015

    Hey Ladies!

    since you are so kind to comment on my post, I wanted to give you and update. I haven't responded because I did have my bilateral mastectomy on January 27th!! and have been a bit tired and loopy ;-)

    Where we stand with this situation as of today, however, is to my knowledge, BCBS has not approved the surgery. What happened though, was my husband had contacted the hospital where I was having my surgery and explained what was happening with the insurance company and asked if they would be willing to allow us to pay cash to the hospital/doctors/anesthesiologist, etc. for the removal of the right breast. It took about two weeks, and a few phone calls back and forth, but they finally got in touch with him and told him not to worry about it, they would approve the surgery and go after BCBS. This wonderful news came the day before my scheduled surgery on the 27th!

    I had decided a few days prior to my surgery to forego reconstruction. At first I made the choice because I thought we were going to have to pay for removal/reconstruction out of pocket, and the plastic surgeon said without the help of insurance to pay for reconstruction, it is out of reach financially, so we couldn't even get a cash price from him. Then I realized for reasons I cannot even put into words, not reconstructing resonates the most with me. So, you are correct when you say that if I choose to not reconstruct that by law they have to remove the non-cancerous breast for purposes of symmetry. If I had chosen to reconstruct, I am not certain where we would be at this point. If anything, at least I received the surgery I wanted/needed and can pursue reconstruction later.

    Right now we are at a stand still as we wait to see what happens between the hospital (Hillcrest Tulsa) and BCBS. I faxed in my own appeal letter and included the information from both the federal law and oklahoma state law. I received a letter back stating that they had approved the unilateral mastectomy and there wasn't a need to appeal. HA! That wasn't even the surgery I was appealing!

    I will keep this post updated when I get new information!


    Love to you all! Susan


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  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited February 2015

    Susan - glad to hear you were able to have the surgery. I hope you get everything sorted out soon. Worry about that is the last thing you need. Wishing you a quick and boring recovery!

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  • ksusan
    ksusan Member Posts: 4,505
    edited February 2015

    As Olaf says, speak with your congressperson's office if you can't get this worked out.

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  • glennie19
    glennie19 Member Posts: 6,398
    edited February 2015


    Susan:  wishing you a speedy recovery and a quick resolution to this stupid insurance issue.

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  • turtlelady
    turtlelady Member Posts: 26
    edited February 2015
    I'm so glad you were able to go ahead with the BMX, and am hoping your insurance company will stop being jerks about it. Situations such as yours are what make me think that the whole "DCIS controversy" has been fomented by the insurance industry. You did the right thing for you. I wish I had gotten a BMX too. It prevents so many problems.
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  • sunshinegal
    sunshinegal Member Posts: 209
    edited February 2015

    This is so totally appalling! I am so sorry you are going through this, SusanSmay! I had BCBS for a couple of years and they were just the worst. :(

    In addition to the good suggestions above about contacting your Congressmen/women and Senators, you might also consider making your situation known to Elizabeth Rosenthal, a New York Times journalist who has been writing extensively about health insurance/health care, through a series called "Paying Til It Hurts." She has a public Facebook group here: https://www.facebook.com/groups/payingtillithurts/...

    She monitors the posts there and occasionally responds. To my mind it would be good news indeed for her to write about insurance companies giving breast cancer patients the (TOTALLY ILLEGAL) runaround like this.

    All the best to you during your recovery!

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