BRCAnomics: Who Needs Anesthesia Anyway?

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Next week is the first anniversary of my mastectomy. It’s been a crazy year of ups and downs: healing,  minor complications, tumultuous emotional fallout, revision surgeries, lingering fatigue, negotiating work while still recovering, adjusting to the new body, the angst of finding out that most of my clothes didn’t fit after so many surgeries, buying new bras and clothes for a body with proportions I’m still not used to. Seriously, y’all, those first few attempts at bra buying post-mastectomy were traumatic as hell.

It’s been a rough year, but mostly deal-able. I’m glad it’s “over”–even though I have some doubts about whether it will ever really be over. Maybe that’s what it means to be BRCA+, you stay in that liminal zone between healthy and sick forever.

Really, one thing about the mastectomy has not been manageable: my insurance company’s refusal to cover particular aspects of the pre-authorized procedure. The saga of “will they or won’t they pay for my breast surgeon?” continues. Although it does seem like there’s been some progress there. We may have finally figured out what the problem is–wrong diagnosis code. Yes, it took 11 months to get to this utterly predictable conclusion. I hope this resolves that problem, but really who knows?

And then today, I received a new bill: insurance is refusing to cover my anesthesia for the mastectomy. Again, this comes a full year after the procedure. You can’t make this shit up, folks.

I’m not going to go into the details of how absurd this is. If you’ve so much as glanced at this blog before, then you already know, so why beat a dead horse? Still, I think the financial aspects of prophylactic mastectomy need to be discussed and I feel the need to document them here. At the very least, I want other BRCA+ women to know they’re not alone.

BRCAnomics Deja Vu

Great news, y’all, my BRCAnomics problems with my insurance company refusing to pay my breast surgeon have been fixed!

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PFFFT! Just kidding! That will never ever happen!

A few months ago, an insurance company representative told me that the issue was being fixed and that the claim should be covered. I didn’t actually believe her. After all, I’ve been through this too many times in the last year to trust anything an insurance representative tells me. So I wasn’t surprised to receive my “revised” bill for $4,336.80. Granted, it’s an improvement over the $6,672 bills that I’ve been receiving for the last year, but it’s still a far cry from what it ought to be. It’s a good thing I can’t set things on fire with my brain.

Insurance ought to be covering 90% of in network claims and they have for every other aspect of the mastectomy and reconstruction. Hospitals, the plastic surgeon, labs, etc. have all been paid. Apparently, though, Anthem BCBS hates my breast surgeon. Or maybe they just hate me. Or maybe they’re just really bad at math.

I mean, I’m not an accountant or anything, but my insurance policy states that I owe 10% for in-network claims. Last time I checked 10% of $6,672–AKA the amount I should actually owe–is $667.20. That’s capitalism for you: the math never seems to add up.

It’s been about a year since my surgery and here I am again, on the phone with billing offices. Literally. Hours of muzak, speaker phone, friendly representatives, the usual. I’ve spoken to four different women in four different offices this afternoon all of whom gave me different explanations for “why” this wasn’t covered. Really, though, they don’t know why it wasn’t covered, because they all say it ought to have been covered.

I don’t know what lesson to draw from all this. I did everything I was supposed to do. I researched surgeons and hospitals that were in my network. I called the insurance company multiple times to check on coverage. I spoke extensively with the finance people at the offices of the surgeons I chose. I made sure that the mastectomy and reconstruction were pre-authorized by my insurance company before I underwent surgery. There’s nothing more that I could’ve done.

But it’s a trap, isn’t it? Insurance companies routinely reject legitimate claims that ought to be covered. It’s a matter of stamina. They know many people don’t have the energy, financial literacy, time, or other resources to contest these nonsensical rejections. They save money by purposely fucking with the mental health and finances of patients.

The more bullshit they throw at me, the more stubborn I’m getting. I don’t care how many phone calls and representatives and years it takes: I’m not paying more than 10%. Ain’t happening.

BRCAnomics: On hold with an insurance representative again, or Groundhog Day edition

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As I’m writing this, I am literally on hold with an insurance company representative. I’ve got my phone propped in front of my computer on speakerphone. Terrible muzak is playing. I’m waiting for the representative to get back from talking to my breast surgeon’s office. This is my fourth phone call of the day. I’ve already made two other calls to the hospital that my breast surgeon bills through and one to the breast surgeon’s office. I’ve been on the phone for an hour and a half and counting. I’ve talked to many very nice, very unhelpful women. It’s always women–at the hospital, at the doctors’ offices, at the insurance company–why is that?

All this, because my insurance company is refusing to pay my breast surgeon for performing my prophylactic mastectomy in August. They’ve paid everyone else, but are refusing to pay him. I keep getting increasingly urgent bills for nearly $7,000 in the mail. This, on top of the bills that are legitimate that I am already paying. Now, the hospital billing department is threatening to send the bill to collections. The sympathetic finance woman in my doctor’s office assures me that the hospital billing department means business. She herself had them send a bill for $7 to collections once and dent her credit score.

Every time I get this bill, I make lots of phone calls to try to get it paid. It’s Groundhog Day: BRCA+ Edition. I call my insurance company and patiently ask what’s going on. Each time the representative tells me that the procedure should’ve been preauthorized. Each time I tell them that it was preauthorized. Each time they check their database and confirm that it really was preauthorized. Each time the representative expresses surprise that insurance is denying coverage, including exclamations like “this is crazy!”and “I don’t understand why this isn’t being covered!” These women are really nice, despite working for a Kafkaesque capitalist machine that’s trying to prevent me from ever having a life without medical debt. They make empathetic clucking noises. They assure me that they will get the problem fixed. They never do.

Yes, I agree, this is crazy. This is absurd, insane, illogical, ridiculous, bonkers, and many other less polite words. I don’t know how many hours I’ve wasted on this nonsense. I’m lucky that I have a flexible work schedule. I’m home right now, recovering from yet another surgery, so I can sit here for hours listening to muzak, trying to be polite to this representative who is jut a lowly cog in the great labyrinthine horror that is Anthem BCBS. The last time this happened I wasn’t so lucky. I was working full time and not really available during business hours, which made it even more difficult and frustrating to waste half a day on the phone trying to fix an absurd situation.

Sometimes I think I should’ve named this blog BRCAnomics. I didn’t know two years ago that I would spend so much time here chronicling the many financial difficulties of being high risk. I didn’t think I’d be caught in this mess. But the economic toll of being BRCA+ takes up an inordinate amount of my emotional energy and brain space. Again and again, I think to myself that it shouldn’t be this way: the American insurance industry is deeply unjust. Again and again, I wish I could afford to take an actual vacation.

In many ways, I’m fortunate: I have “good” insurance (is there such a thing in the United States?); I have a job that I love; I have friends and family who I can borrow money from or who flat out sent me cash to help with my surgery expenses; I’m well educated and have been able to bring myself up to speed on medical literacy; I have the aforesaid flexible schedule. Yet even with all this privilege working to my advantage, I can only describe my BRCA+ experiences as a colossal financial clusterfuck.

And, unexpectedly, it’s not just the prophylactic mastectomy that’s giving me issues. Even with my many resources, this BRCA mutation has been an economic albatross since I first sought out genetic testing. I cannot imagine what’s it’s like to live with high risk as a poor or working class woman without insurance. I don’t even want to think about how much worse this financial burden would be if I were faced with an actual cancer diagnosis.

I still can’t believe how little we talk about these financial issues in the BRCA+ community. That some people act like it’s impolite or inappropriate to talk about finances or to critique the insurance industry. That people think I’m too angry about it. Well, good news: I’m past frustration and fury. I’m exhausted.

The insurance representative just returned. She says that she has fifteen years of experience working in the insurance industry and nothing about this claim being rejected makes any sense to her. She’s going to try to fix it. I’m not too sanguine about the probability of her success. I’ll tell you one thing though: there is no way in hell I’m paying this bill.

BRCAnomics: The Economic Costs of High Risk

When Angelina Jolie came out about her BRCA+ status and prophylactic mastectomy, she was criticized for her class privilege: Jolie, the argument went, could afford to have genetic testing and risk reducing surgery because she’s a rich celebrity and her editorial in the NYT did not sufficiently address the struggles of average high risk women for whom such measures were unavailable.

I was skeptical of this claim at the time. Although genetic testing for BRCA mutations was expensive when Myriad Genetics had a monopoly on it, my own insurance company covers genetic testing for high risk women and preventive surgery for BRCA+ women. It’s cheaper for the insurance company to pay for a prophylactic surgery than it is for them to pay for cancer treatment. 58% of American women (a number that should grow under Obamacare) have health insurance and both genetic testing and risk reducing surgery should be  accessible to most of those women. (I also thought that Jolie’s op ed could not possibly cover every element of what it means to be BRCA+ and that people were asking too much of her, but that’s ‘nother post)

Nowadays, my perspective on BRCAnomics is more complicated. My experiences with cancer screening have left me jaded as I’ve struggled to pay for hospital bills that my insurance company refused to pay. Indeed, one local hospital is currently suing me for $1,200 for a mammogram I received over a year and a half ago. Although my benefits were checked when I checked into the hospital to have the mammogram, my insurance company has repeatedly denied coverage for it and I am now responsible for the bill. After a year and a half of cancer screening, I have been buried under parking fees, copays, other out-of-pocket expenses, and other hospital bills.

Sometimes the insurance company will listen to reason and cover the screening they previously refused, and sometimes they will not. Either way, it takes considerable emotional energy to deal with it. It took me nine months of anxious phone calls to get coverage for a single emergency room visit. Considering the frequency of cancer screening for BRCA+ women, there’s a lot that can go wrong. All this, despite the fact that I have “good” insurance. I cannot imagine facing this situation in my teens or early twenties when I did not have any health insurance at all.

In other words, the emotional costs of being BRCA+ are devastating, but there are also economic costs–costs that we in the BRCA+ community rarely talk about. Our support groups are filled with recommendations for surgeons, hospitals, procedures, recliners, mastectomy camisoles, and so many other things with little attention to the fact that BRCA+ women are not only ethnically and racially diverse, but also socioeconomically diverse. We all face the same limited options of screening, chemoprevention, and surgery, but we do not manage these risks with the same resources.

These experiences have made me wary as I’ve gone about planning risk reducing surgery. Obviously I want the best healthcare money can buy, but my efforts to access top-notch surgeons and hospitals is limited by the fact that I can’t afford to pay very much out of pocket. At the same time, it’s hard to get an estimate of surgical costs without jumping through a lot of hoops. All of the doctors that I spoke to would not give me a price quote until after I’d done a consultation with them, a process that takes many weeks or even months.

Furthermore, even within the BRCA+ community–among women share pictures of gaping wounds and graphically discuss post-surgery constipation–there’s a reluctance to get into the gritty of the costs of surgery. I’ve heard many women sweep away financial concerns with comments like “don’t let money keep you from getting the best!” (as though it is your individual responsibility to overcome systemic economic inequality) or “fight the insurance company and you’ll win!” (as though everyone has the time/energy/ability to do so). (Bryna over at Blogging BRCA is rare insofar as she has posted a tally of her costs–thank you, Bryna!)

There’s also pressure within the BRCA+ community to go to the “best” doctors. When women ask for surgeon recommendations for DIEP or SGAP, for instance, they are almost always bombarded with glowing recommendations from posters who’ve gone to  The Center for Restorative Breast Surgery or NOLA as it’s simply called. The Center doesn’t accept most insurance and they balance bill–that is, they pass on costs not covered by insurance to their patients. When women express concerns about the costs of going to there , satisfied NOLA patients often note that the center will “work with you” on costs if you’re persistent. I saw one poster tell a woman with breast cancer that if she really wanted the best breast reconstruction–and who doesn’t?–she would sell her house to pay for it at NOLA. That suggestion horrifies me.

My efforts to find out more about the costs at NOLA and other breast reconstruction centers like those in Charleston and PRMA online didn’t come to much. Perhaps the costs I was cited will be useful to someone else.

New Orleans Costs:

  • Primary Surgeon: $400 for office visits and $30,000 for the surgery
  • Assisting Surgeon: $150 for office visits and $1,000 for the surgery
  • Hospital costs: $250
  • My total estimated costs: $31,800
  • Total cost of the surgery: $264,000

The woman I spoke to about finances at NOLA told me that their doctors and their facilities are exceptional. I don’t doubt it. She also said insurance companies didn’t want to pay their doctors reasonable compensation for a difficult and highly skilled procedure–one or two thousand dollars per surgery. I don’t doubt that either. But from a patient’s perspective, I question the ethics of refusing to take insurance, balance billing, and charging exorbitant fees to desperate women with breast cancer or genetic predispositions for breast cancer. Obviously, I will not be going to NOLA.

There are some nonprofits that try to help women with limited resources. Christina Applegate’s foundation Right Action for Women helps high risk women who do not have insurance get MRIs for surveillance. Hope Lodges give free housing to women who are traveling for breast cancer treatment and/or reconstruction. These are great programs, but they are merely bandaids on the gushing wounds of the corrupt capitalist medical and cancer industries.

Liberals often talk about how important it is to get health insurance for uninsured Americans. As I’ve said before, I think Obamacare is a step in the right direction for high risk women. But it doesn’t go nearly far enough. In the end the Affordable Care Act upholds the fundamentally unethical insurance industry in the United States, and BRCA+ women from a variety of socioeconomic backgrounds must carry the emotional, psychological, physical, and financial burdens that come with being high risk.

[edited to add: WordPress ate this post, so I’m reposting]