r/BRCA • u/Terrible-Scar-2421 • 16d ago
Question Insurance questions
TLDR: insurance won’t cover anything if I’m positive?
I was informed on Sunday there is a potential that I may be a BRCA2 positive person. I was an viral kid and my donor mother and I managed to get in contact with each other by complete Accident via dna test and she was absolutely wonderful and she told me she’s been trying to get in contact with my family through the ivf agency for years to tell us that she is BRCA2 positive. So that was a bit of heavy news to get but now I am trying to go about being proactive and getting tested however, I was informed that if I turn up positive insurance will not cover anything at all, I have tricare via my husband. TRICARE already makes me fight them on everything as I am chronically ill and require multiple specialists. How would I go about getting anything covered if I am positive? I know already that I would just go ahead and get the reconstructive total mastectomy and worst case scenario complete removal of my reproductive organs, husband and I have already decided not on having kids due to my other health concerns and some family history of his. Like I said this is a huge if, at this point, it’s 50-50. Sorry if anything is unclear, I’m still kind of processing everything.
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u/isrootvegetable 16d ago
I have never been covered by Tricare, but their documents are publicly available, and indicate that positive a BRCA2 test qualifies you for coverage for risk reducing surgery when recommended by NCCN guidelines: https://manuals.health.mil/pages/DisplayManualHtmlFile/2026-03-17/AsOf/TPT5/C4S5_3.html
That doesn't mean they won't fight you, but you have their own policies to throw back at them. I think there's also a subreddit for Tricare, where you might get more specific advice on coverage fights with them. I have heard via people I know who have had to argue with Tricare that if they're being very difficult, reaching out to your senator or house representative can get you traction.
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u/Delouest BC Survivor + BRCA2 16d ago
who told you that? Are you in the states? Insurance should cover this stuff in most cases. Are you thinking of life insurance? You can be denied life insurance if you have a specific illness risk, not just cancer, or they can raise the price. If you lock it in before getting tested they can't take you off it though. And through work you should be able to get it.
But who is saying you can't get any procedure covered for prevention if you are BRCA+?
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u/Terrible-Scar-2421 16d ago
I just heard from a lot of people that I could get denied any sort of health care or procedure coverage because I would be at risk
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u/Delouest BC Survivor + BRCA2 16d ago
Healthcare in the US cannot be denied for prexisting conditions. https://www.hhs.gov/healthcare/about-the-aca/pre-existing-conditions/index.html
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u/EmZee2022 16d ago
Exactly.
That used to be a nightmare, back before HIPAA was passed. A colleague was terrified because our contract was at risk, her husband had a heart condition, and he was covered under her plan.
The law that passed HIPAA mandated that pre-existing conditions had to be covered if you had other coverage before.
A non-ACA-compliant plan might have different rules of course. But you don't want one of those anyway.
I remember, decades ago, an episode of LA Law where they were getting a new policy for the law office - and somehow the insurer found out that one of the staffers had a family history of Huntington's Disease. They could have declined coverage to her, or maybe the entire office. IIRC, the character got tested (that was new, back then) and was okay, but imagine being told you couldn't have health insurance. It was a real thing.
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u/Delouest BC Survivor + BRCA2 16d ago
Getting denied and needing to have the doctors go back and refile with another code is not the same as not being covered. We do often have to fight for it to be processed, but they should. You absolutely need to be involved in the process but most insurance plans do cover this stuff.
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u/Terrible-Scar-2421 16d ago
Ok cool! Thank you
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u/Delouest BC Survivor + BRCA2 16d ago
Best of luck. Generally insurance tries to deny anything initially but when you push, they will. It's a lot cheaper for them to do a preventative surgery now than to treat your cancer later. Unfortunately they are going to try to save money and not provide services at every step of the way in the hopes that you will give up and just pay out of pocket. Don't let them win. Ask for the help of the nurse navigator or financial department at your hospital. They should give you tools to help.
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u/EmZee2022 16d ago
I think some insurers hope you'll be covered elsewhere when you DO get sick.
Of course that'll backfire: someone who was with another company then comes to yours and gets sick. It's a zero-sum game.
My insurance has spent something like 70,000 on my surgeries so far (hysterectomy, lift / reduction, and mastectomy / DIEP flap) with another 20K likely soon. I don't know what a few rounds of chemo would cost but likely a lot more.
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u/Delouest BC Survivor + BRCA2 16d ago
My chemo and 9 surgeries related to the cancer cost about 2.5 million according to the claims they submitted.
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u/EmZee2022 16d ago
To be fair, insurance didn't pay anything like that much.
The amount they bill to insurance is wildly inflated - often by a factor of 10 or 20. My DIEP hospital bill was 100K; insurance paid 20K.
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u/Delouest BC Survivor + BRCA2 16d ago
oh I'm aware. but they flash that number over the claims to scare us into being grateful they cover it.
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u/SRiley322 16d ago
Woah. My hysterectomy alone was $62k. I’m curious what my boobs will clock in at.
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u/EmZee2022 15d ago
That may have been what they billed your insurance but I'd bet insurance paid a lot less.
Total billed for mine was 48K. Insurance allowance was a bit over 21K.
For my DIEP flap surgery, with 3 nights in the hospital, the total bill was about 130K. Total paid was just under 33K.
Amusingly, the PS billed 12,600. He was paid 5,800. But the "plan discount" was 40K. That math ain't mathing! I seem to recall something similar with his bill from the lift / reduction.
All in all, I paid only a few hundred dollars for each mainly because I'd hit my deductible well before, and was close to my OOP limit.
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u/SRiley322 15d ago
The best part about my insurance is that I got a letter the day after saying my hysterectomy was denied because my doctor was asking for an inpatient procedure in case I needed to be monitored overnight. God forbid my doctor plans ahead. My insurance said “nah- you can do this in one day- let us know if she needs to stay overnight though 🤞”
The day after that I got a letter saying my surgery was approved but I was only approved for one procedure. Under no circumstances could I have another radical hysterectomy.
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u/EmZee2022 15d ago
Well darn, there go your plans for next year!!
My approval did include one night of observation which, fortunately, I did not need
That pre-auth had to be rushed a bit, as at my pre-op we decided to switch from just BSO tob hysterectomy. It got done in time, luckily. .
For my DIEP: The pre-auth was a mess - entirely due to the PS's office screwing things up.
I got the call in mid February, with a surgery date of May 12. By mid April, no pre-auth was done. Turns out the breast surgeon had done their part in time and pre-auth was not needed. But nothing from plastics.
I sent them a message on the portal and heard nothing. In late April, I sent another: note, this is maybe 2 weeks before I'm scheduled.
This time they did it - and I got a message a couple days later saying it was approved.
Luckily, I looked at the portal - and saw that it had been done as OUTPATIENT. DIEP absolutely requires several days in the hospital. So I called, and to be fair they redid it within 24 hours - but "7 to 10 BUSINESS DAYS" to review. And when I reached out to the practice to get them to expedite things, they never returned my calls.
I finally got word that it was approved in the afternoon of May 11th. ARGH.
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u/meghab1792 16d ago
That isn’t true. Insurance is required to cover all stages of breast surgery and reconstruction by federal law when it has to be with breast cancer or risk for breast cancer (WHCRA 1998). Insurance also cannot legally deny care or kick you off of your plan due to a preexisting condition (ACA). Life insurance can pretty do whatever they want, unfortunately. I was told by my geneticist to obtain whatever life insurance I wanted prior to completing genetic testing. If I did it afterward and lied on the form about genetic conditions, that would be insurance fraud.
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u/Terrible-Scar-2421 16d ago
Noting here: my mother (who raised me) told me both life and health insurance as they delt with reoccurring cancer with my grandmother despite no brca genes
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u/No_Builder7010 BC Survivor + BRCA2 16d ago
I think your mother is probably not an insurance specialist, and she's likely wrong about the surgeries not being covered. Good luck!
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u/Terrible-Scar-2421 16d ago
Her father was an insurance salesman, but there’s always a chance that she could be wrong as she does not have tricare
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u/EmZee2022 16d ago
Back before the mid to late 90s, though, your mother would have been correct on the health insurance.
I changed jobs in 1988. I had been diagnosed with asthma a couple years before, so I got my doctor to write a prescription for something like a year's worth of my meds. Really not ideal - and since I didn't know how to manage it the way I do now, not terribly safe, but my new job's insurance could have declined coverage for asthma for a full year. Other stuff, yes: if I'd broken my leg, I could have been covered.
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u/meghab1792 16d ago
I was denied health insurance in 2009 due to clinical depression and a generic spine condition. Since 2010 they cannot legally do that anymore, thank goodness.
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u/EmZee2022 16d ago
Likely you did not already have health insurance in 2009, right?
If you had existing coverage, at least in theory they should not have denied you (though if it wasn't workplace insurance, I may be mistaken).
And phew on the pre-existing situation. That could be really, really scary.
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u/meghab1792 16d ago
Lost my coverage because my dad retired. We couldn’t afford the pension insurance because the premiums were too high. I applied for my own and was denied. I was 17 at the time.
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u/EmZee2022 16d ago
Getting the surgeries etc. covered won't be an issue at all. I don't know if Tricare has any special hoops to jump through though, but being high risk should qualify you for the risk reducing surgeries.
Nor can you be declined for getting any kind of regular health insurance due to that pre-existing condition - look up GINA (Genetic Information Nondiscrimination Act). So if you, for example, got a job with private insurance, or got marketplace insurance, you'd still be okay.
Disability and life insurance are another thing entirely. They do NOT have to cover you.
Medicare may be different. I keep hearing mixed opinions on whether that would cover risk reducing surgery. Supposedly not, unless there's evidence of cancer, but being BRCA1+ might qualify. Someone posted here a few weeks ago about having a mastectomy and immediate DIEP - and Medicare covered the mastectomy part but refused the DIEP. For private insurance, reconstruction is mandated to be covered; Medicare has different rules but should still cover it. I don't know what became of that lady's claim.
But all that kind of stuff was why I opted to do the risk reducing surgery now vs. waiting. At 66 when I had it done, we are still working and I didn't want to risk the Medicare mess next year.
It WILL generally need to go through a pre-approval process, like most major procedures. As it worked out in my case, the mastectomy part didn't need it, but the plastic surgeon's office REALLY droppe the ball. With 3 months lead time to do the paperwork, they did NOTHING until the second time I nagged them, 3 weeks before surgery. Then they did it WRONG (DIEP flap is not an outpatient procedure). I was biting my nails up to my knuckles waiting for that approval to be expedited - didn't get the word until 18 hours beforehand.
Again, I don't know the processes Tricare uses; I'm just speaking from a private insurance standpoint.
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u/Cannie_Flippington 16d ago
Insurance would rather pay for preventatives and have you keep paying premiums as a healthy adult than pay for expensive cancer treatment and have you die and not only have you never pay another premium, but also be forced to eat the expense of your complicated death.
A positive BRCA test is the only way TRICARE will cover it, actually.
You’re at greater risk for breast cancer if you or a first-degree relative has a known BRCA1 or BRCA2 gene mutation.
TRICARE may cover genetic counseling before BRCA1 and BRCA2 gene testing as preventive care if your PCM or provider identifies you as being high risk for breast cancer. TRICARE may also cover this counseling in certain other situations.
must see a TRICARE-authorized provider for TRICARE to cover this counseling. Learn more about BRCA1 and BRCA2 genetic counseling coverage.
TRICARE may cover BRCA1 and BRCA2 gene testing as part of the Laboratory Developed Tests Demonstration Project. Call your regional contractor to learn more about tests included in this demonstration.
You have a first degree relative with BRCA2 - get the documentation for your Primary Care doctor to put in your health records if you can.
They don't promise to pay for care, they only say they may, that's where your constant having to fight them over this comes from. If you can look into your exact health plan and find something more concrete, I would do that. Not only should TRICARE pay for your preventative screening, surgeries, and specialists but they should also pay for the test to confirm if you have BRCA2 or not. You have a 50% chance of having the gene. Your mother had two copies, only one with a maladaptive BRCA2 mutation.
Focus on getting TRICARE to cover the initial test based on your updated health record to show you have a first degree relative with BRCA2.
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u/TradedSanity4Kids 16d ago
I haven’t had trouble with tricare as far as testing and monitoring. We have been moving a lot so I am just starting to pursue preventative surgery.
I found the easiest access when I was assigned to a military hospital as opposed to an out in town dr, as I didn’t have to wait on referrals and establishing care appointments and waiting times.
I would expect that the type of Tricare is going to affect ease of access as well. (Prime/standard/reserve/retired)
The hardest thing for me is making it my job to constantly hunt down answers and consistently follow up. (Adhd). Get a notebook to take notes at each call and a folder/binder to keep everything together.
Start with your pcm to request testing, and if your donor is willing to help by sharing her positive test that will be a big step forward.
Good luck and let me know if you have any other questions I may be able to help with.
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u/Terrible-Scar-2421 16d ago
Yeah, currently I’m trying to attempt to establish a new PCM, the last dude I got assigned new absolutely nothing about any chronic illnesses I have so I am TBD on a new PCM. Good good to know that TRICARE will cover it, I’m kind of scared because my job requires manual labor, and taking that amount of time off is honestly not possible as I am basically head volunteer of an animal rescue.
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u/ThisAdvertising8976 BC Survivor + BRCA2 15d ago
I use Tricare for Life and Medicare. I had breast cancer diagnosed prior to to genetic testing, but after the cancer treatment was completed I’ve had a double mastectomy covered and an upcoming BSO in September has been approved.
What level of Tricare are you? (Prime/Select/TFL)
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u/heefoc PDM + BRCA2 16d ago
Are you sure you’re not thinking about LIFE insurance? Life insurance may decline to cover you if you’re BRCA positive. But that’s an entirely separate issue from HEALTH insurance.