BRCAnomics Deja Vu

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

image

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.

Advertisements

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

IMG_1301

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: Don’t Buy into Cancer Consumerism

Ah, the shower shirt ($78 + shipping), a garbage bag for showering after mastectomy. I remember seeing these kind of things when I was planning my surgery and wondering if I needed them. I was terrified and tried to micromanage the entire situation. I was ready to empty my bank account to make the experience even a smidgen less awful.

To all the scared women facing mastectomy and wondering if you need a shower shirt, I get it. I’ve been there. Now, I’m here on the other side of mastectomy to tell you that you do not need this shit.

You don’t need axillapillas ($20 + shipping each), for under your arms–regular pillows work just fine. You don’t need pink pockets ($19.99 + shipping) to hold your drains–pinning them to your mastectomy bra works just fine. You don’t need the brobe ($89.99 + shipping) to carry drains and cover up–regular pajamas and bathrobes work just fine.

Most of these products, and a zillion others, are made by companies founded by well-intentioned women who’ve had mastectomies. They’ve been through it themselves and wish there was a better way. I wish there was a better way too. Surgery sucks. It’s painful. It’s expensive. It’s inconvenient. But buying unnecessary, overpriced products that you’ll use once or twice is not going to make the situation any better or make you more comfortable. It’s just going to make you poorer and leave you with a bunch of useless stuff once you’ve recovered.

Well intentioned or not, these products sell by preying on the fears of vulnerable women facing surgery. It’s capitalism, baby: there’s lots of money to be made off of BRCA+ women and women with cancer. Cancer consumerism–you don’t need it.

 

You are not required to be pretty

pretty

[This meme shows up on my Facebook newsfeed periodically. It’s easy to see why. Although it is attributed to Diana Vreeland, the quote originates from Erin McKean’s blog A Dress a Day. You can read her wonderful post here.]

Jessica Queller’s Pretty is What Changes (2008) takes its title from Stephen Sondheim’s song “Sunday in the Park with George.” Queller uses the relevant verse as an epigraph to her memoir: “Pretty isn’t beautiful, Mother/ Pretty is what changes/ What the eye arranges/ Is what is beautiful.” A lovely sentiment–that beauty is in the eye of the beholder, as Queller explains in this NPR segment–especially given the way Queller details her fashion designer mother’s troubling obsession with beauty.

Given this critique of beauty standards and Queller’s attempts to position herself as the nerdy ugly duckling in a family populated by glamorous women, it’s surprising that Queller talks about putting on makeup before her prophylactic bilateral mastectomy and placement of expanders for reconstruction: “I had put on a little blush and lipstick that morning while dressing for the hospital. I was, after all, my mother’s daughter” (201). Before Queller’s surgery, her sister Danielle tells her that a young male doctor is being flirtatious and Queller exclaims “Thank goodness I put on blush this morning!” (201). When she wakes up after the procedure, Danielle says “You’re the only person who could come out of five hours of surgery with her blush and lipstick looking fresh and rosy!” (202).

Before her exchange surgery, Queller says that she feels tired, so “I certainly hadn’t bothered with makeup” (208). However, as she’s waiting in pre-op before the surgery, the same attractive doctor appears to say hello and mentions that he’ll check in on her during recovery.

“Dr. Kutchin left, and Dani and I turned into giggling, frazzled eighth graders.

‘Did you bring my makeup? I need some blush!’ I cried.

‘Yes–it’s in the bag. He likes you!’

‘I look like hell–he said he was going to visit in recovery!”

‘Don’t worry.’ Dani took out a makeup brush and dusted my cheeks until they were rosy. ‘All better.’ (208).

So much for following through on the promises of the book’s title and epigraph. It’s disheartening that these scenes come towards the end of the memoir, when Queller has already detailed the many problems with her mother’s obsession with beauty. In the end, her book shows that BRCA+ women can stay pretty despite the physical and psychological stresses of grueling risk-reducing surgeries. Maintaining dominant white beauty standards is as easy as blush and lipstick.

This obsession with maintaining prettiness during mastectomy isn’t limited to the BRCA+ community, of course. It also pops up in Marisa Acocella Marchetto’s comic Cancer Vixen (2006), a book with so many ideological problems that I’m going to restrain myself and just mention her constant evocation of MAC cosmetics.

And of course, there’s Geralyn Lucas’s Why I Wore Lipstick to My Mastectomy. I heard Lucas speak at the Joining FORCEs conference last summer and she made it seem as though wearing red lipstick into her surgery was a performance of the kind of person she wanted to be throughout her experiences with breast cancer: bold, confident, strong, feminine. The book actually treats lipstick in a far more complicated manner than this and I don’t have time to deal with it fully here. Suffice it to say that somestimes she depicts applying lipstick as a confident act and sometimes it seems more like an act of desperation. Still, Lucas not only wore lipstick into surgery, but also named her memoir after this gesture.

Encountering the makeup trope repeatedly in supposedly empowering breast cancer and BRCA+ memoirs, all I can think is “For fuck’s sake, am I the only one who read The Beauty Myth?”

When I told someone I was going to write a blog post on wearing makeup into surgery, he said “Why bother? It’s obviously stupid. It’s not worth your time.” In some ways, he’s right: wearing makeup into surgery is clearly a bad idea–just ask your surgeon. But I think the problem of pretty goes far beyond Queller, Marchetto, and Lucas. It’s symptomatic of larger trends in breast cancer and BRCA+ discourses, which are still dominated by a certain kind of white middle-class femininity. Such conventional beauty standards are especially on display this time of year, as we enter the annual pink orgy that is Breast Cancer Awareness Month (a “month” that now stretches its tentacles into September and November).

To be clear, I’m not talking about body image issues surrounding mastectomy, chemotherapy, radiation, and/or reconstruction here. I’m talking specifically about beauty standards, the pressure to return to “normal” femininity and behavior as quickly as possible (or preemptively in some cases), and the ways in which conventional femininity is repeatedly presented as a form of empowerment to women grappling with major health issues like BRCA mutations and cancer.

The idea that women can and should be pretty while undergoing mastectomy has a long institutional history in Reach for Recovery programs in the mid-twentieth century. Such programs helped women return to conventional gender roles as quickly as possible. They were given prostheses, wigs, and make up, and taught how to use them despite limited range of movement after disfiguring Halsted mastectomies.

Reach for Recovery not only helped women look their best more quickly, but also helped women hide the fact that they were undergoing treatment for breast cancer at all. To put it in Maren Klawiter’s terms, such programs upheld the “architecture of the breast cancer closet.” It’s a familiar sentiment to anyone who has paid any attention to Bright Pink’s annual corporate-sponsored tribute to heteronormative white middle-class beauty standards, Fabfest.

So for the record: you are not required to be pretty, ever, but you are especially not required to be pretty before, during, or after fucking surgery. Wearing makeup into surgery isn’t empowerment. It’s a displacement at best, pure patriarchy at worst.

Psychological Recovery from Prophylactic Mastectomy

black-feminism

I generally don’t talk about my personal life here. There are a lot of BRCA+ blogs that deal with the personal experiences of individual women, and I want the risky body to do something different. Still, I have benefited so much from the personal stories BRCA+ women have posted online about their surgeries that I feel compelled to pay it forward by talking about my own recent prophylactic mastectomy.

I am recovering from the mastectomy and from the first stage of DIEP FLAP reconstruction. After my revision surgery this winter, I will post a detailed account of my entire mastectomy “journey” (a word I hate, but that’s another post). I’ve started drafting that comprehensive post. It is already absurdly long and probably completely TMI, because when I was trying to plan my own PBM and reconstruction, I was desperate for any information about either procedure that I could get my hands on. I hope that it will help someone out there who is anxiously considering, planning, or waiting for her own surgery. But for the moment, I want to talk about how I’m feeling right now, three weeks out of surgery.

I’ve read a lot of accounts of mastectomy experiences by BRCA+ women and BRCA- women with breast cancer. Many of them talk about post-surgery depression. Even the packet of information my plastic surgeon gave me warned that many women experience depression after surgery, it’s normal, and it usually passes in a few weeks (I’m not so sure that it passes so quickly, or ever for that matter, but whatever).

I didn’t know how I’d react after the surgery. I’ve had two years to get used to the idea of mastectomy and while I was 100% certain that it was the best choice for me, it’s hard to predict how you’ll feel when you actually following through with having supposedly “healthy” body parts removed. I was ready for the post-surgical blues and warned my partner to expect it.

But I did not get depressed after surgery. I do not feel a sense of loss. Quite the opposite. Rather than mourning the amputation of my breasts, I immediately felt like the newly transplanted DIEP FLAPs are my breasts–not “foobs”, “noobs”, “fake boobs”, or any of the other euphemisms that get bandied about in the BRCA+ community. When I peer down the collar of my shirt, my cleavage looks the same as it always has: you can’t even tell I’ve had a mastectomy. My new breasts are not perfect, not by a long shot, but I look like me. Even better, I feel like my old self–the self I was before I got my deleterious test results: the woman who didn’t live in constant fear of cancer.

More than feeling relieved to have lowered my risk of breast cancer dramatically and relieved to not have awoken from surgery with bride-of-Frankenstein breasts, I feel buoyant, happy, and free. As a natural-born cynic and self-declared feminist killjoy, these are not words I use lightly, but it’s true: since my surgery I have been uncharacteristically joyful.

For instance, my Facebook status updates are usually filled with sardonic quips, workplace in-jokes, cat pics, and political snark–I don’t post about my personal life much there either. But check out my first post-surgery Facebook status update:

“I knew I would feel relieved, but I could not have predicted how happy I’d be. I haven’t been this happy in two years. It could be the percocet talking, but I think it’s the fact that I kicked founders effect’s ass. Family curse, broken, boom, joy. [/earnest facebooking]”

In the weeks after surgery, I started crying tears of happiness when people would do kind acts for me. I realized that I am part of several different communities that care for me and want to help me in my recovery. Sometimes you don’t realize you have people until you really, really need them.

Part of this emotional high may have something to do with the heavy duty drugs I’ve been on. Part of it is probably hormone fluctuations from losing estrogen-producing breast fat during the mastectomy. But a big part of it is that after getting my BRCA+ test results two years ago, I have lived under a black cloud waiting for lightning to strike. I have been angry, confused, terrified, and sad–sometimes all at once. Now, I’m not. My breast surgeon estimates my current breast cancer risk is 2%. I feel liberated.

BRCA+ women have much in common, but everyone reacts to mastectomy in their own way. If you are planning a PBM with or without reconstruction, I wish I could say that you will feel this kind of jubilance after your surgery. I wish I could guarantee every woman facing mastectomy that they will have this kind of positive experience. I can’t.

But I can say this: deciding to have a prophylactic mastectomy, planning it, consulting and choosing doctors, deciding on reconstruction, scheduling the surgery date, and waiting for that day to come–these things were far, far worse than the surgery itself and the recovery I’m currently experiencing. The waiting really was the hardest part.

tom petty

[This meme is misleading, because I almost always agree with Tom Petty]

Followup: prophylactic mastectomy for average women

140624-2d-3d-mammograms-jsw-136p_b324f3843fa4547c1925c97fadba01c5.nbcnews-ux-960-800

 

 

 

 

 

I wanted to followup on my previous post about Peggy Orenstein’s article on prophylactic mastectomy for average women with breast cancer because I’m seeing some chat about it in BRCA+ communities that disturbs me.

First of all, some BRCA+ women are getting really defensive about the article, posting things like “PBM saved my life!” or “when I was diagnosed with breast cancer in my right breast, I had a double mastectomy and they found cancer in my left breast too!”

This makes me wonder if these women have actually read Orenstein’s article, which focuses on mastectomies for newly diagnosed women who don’t have a BRCA mutation. There have been many scientific studies about average women without BRCA mutations removing their healthy breast along with their cancerous breast after diagnosis. The scientific evidence shows that bilateral mastectomy does not improve survival rates for breast cancer patients who not have a BRCA mutation–repeat, in patients who do not have a BRCA mutation.

I don’t know why some BRCA+ women are getting so riled up about this. The circumstances of BRCA+ women are quite different from those of BRCA- women, and Orenstein’s argument does not apply to us. She makes it perfectly clear that she’s writing about “CPM” (contra-lateral prophylactic mastectomy for average women), not “PBM” (prophylactic bilateral mastectomy for BRCA+ women).

Secondly, I’ve seen women respond to Orenstein’s article by saying they feel psychologically better having had their healthy breast removed. I’ve written about the psychological reasons for PBM before, and I think psychological well-being is a perfectly valid reason for BRCA+ or BRCA- women alike to choose mastectomy. However, like Orenstein, I’m concerned that average women who are choosing CPM may be doing so without getting all the facts about it.

To me, the problems with CPM are manifold. On the one hand, many women are not familiar with issues surrounding breast cancer treatment and they have to quickly get up to speed right when the clock starts ticking after diagnosis, a moment when they may not be in the best mental state to gain literacy in medical discourses. On the other hand, doctors are not doing a good job of communicating to patients the facts about their risk of recurrence with and without CPM, nor are they doing a good job of communicating options for treatment and reconstruction.

Finally, some women seem angry at Orenstein because they simply don’t want to hear to the facts about CPM.  In Cancer Vixen, Marisa Acocella Marchetto’s friends try to get her to see a top oncologist at Sloan-Kettering, but she keeps avoiding it. Finally, she admits that she doesn’t want to see the specialist because doing so would force her to admit that she has “real” cancer, the kind that requires an expert. In other words, going to a world-class cancer hospital like Sloan-Kettering would force her to acknowledge that her life is in danger.

I wonder if something similar is at play with the backlash against Orenstein’s article. As a lifelong feminist killjoy, I know how pissed off people can get at those of us who speak hard truths. NPR recently ran a segment about a study that showed a surprising number of people don’t even want to know if they have a bad medical condition. This morning I saw one woman declare that Orenstein had a lot of nerve telling her to be well informed when she was such a wreck after her diagnosis, that she had a right to put her head in the sand. How common is this sentiment? Is it the case that some newly diagnosed women don’t want to know all the facts about CPM? Is it mentally easier for some women to just remove both breasts and move on?

The choice to have a unilateral or bilateral mastectomy, whether for prevention or treatment, is highly personal, and I have no interest in telling individual women whether or not they should keep or remove their breasts. But both patients and BRCA+ patients need to make well-informed decisions based on sound medical evidence. For this to happen, the medical industry needs to do a better job of communicating risk and treatment options to women, and women need to be willing to face the facts before choosing whatever option they deem best for their health and well being.

 

HBOC Threat Level Orange

Image

I may or may not have ovarian cancer. I’ve had a host of “whispering symptoms” for a while now that three different general practitioners have repeated misdiagnosed. Each time I reminded them that I was BRCA+ and asked if I should be screened for ovarian cancer. They waved it off. As is typical with ovarian cancer, these symptoms could very well turn out to be something else entirely. My doctors are rushing me into extra screening this week.

The timing is ironic. My usual twice annual screening was coming up soon anyway, so I already had appointments for a CA-125 test, ultrasound, and physical exam that have now been urgently condensed and sped up. I’m also preparing for my prophylactic mastectomy surgery later in the year. So the same day my doctor sits me down with a grim face to say it may be ovarian cancer, a bunch of supplies I ordered from Amazon appeared on my doorstep–shower chair, bed tray, wedge pillow, etc.

It’s a funny thing to be preparing for a surgery you may not be able to have because of more pressing medical issues. Part of me is mentally putting the mastectomy surgery on hold until I have answers about these symptoms. Part of me thinks the symptoms will turn out to be much ado about nothing and I should carry on with mastectomy plans. It’s hard to know what to do or how to occupy myself while I wait for answers.

I’ve been joking that this ovarian cancer scare has put my family and I on threat level orange, like the Homeland Security alerts. Hopefully, it will all turn out to be a false alarm. But one of the many frustrating things about having a BRCA mutation is that, in a way, you are always at threat level orange, not unlike Homeland Security terror levels after 9-11. If/when I’m told that I have “no detectable cancer” (which is as much as a high risk girl can possibly hope for), I’ll still be looking at decades of false alarms. Even if I have a prophylactic mastectomy with oopherectomy, salpingectomy, and hysterectomy, I will still be predisposed to other cancers. The best case scenario is a life of fear and threats with no actual diagnosis–a life of threat level orange.

This threat level system is really more my style

The Neave Sisters

https://i2.wp.com/resources3.news.com.au/images/2013/05/15/1226643/674439-elisha-neave-is-dying-from-a-rare-and-aggressive-cancer-chrissy-keepence-and-veronica-neave.jpg

I recently purchased Veronica Neave’s Pieces of Me, a documentary companion film  to her autobiography about her family’s experiences with BRCA2. Unfortunately, the DVD is coded for a different region and won’t work on my American DVD player (digression: DVD regions are a total scam). I found part of the film on YouTube, so you can watch about a segment in which the BRCA+ sisters grapple with how to manage their risk. At one point in the film, Veronica Neave says “knowledge is a gift–or so I thought” and notes how difficult it is to figure out to what to do with the knowledge of being BRCA+ when the options for managing high risk are so “barbaric.” I couldn’t agree more.

I am really disappointed that I can’t watched the entire movie, because Veronica Neave and her sisters Chrissy Keepence and Elisha Neave have such an amazing rapport and they instantly won me over (incidentally, Chrissy is wicked stylish). But in my quest to find the film online, I fell down a YouTube rabbit hole. It turns out that the Neave sisters often appear in the Australian media to discuss BRCA+ issues. You can find a really great interview with them here and here that was filmed some time after Angelina Jolie announced her mastectomy.

The interview reveals that Neave’s mother Claudette is fighting a recurrence of breast cancer, her youngest sister Elisha (who in the film put off prophylactic surgery because she felt that she had more time) was diagnosed with ovarian cancer at 33, and her father has also recently passed away. This is what it’s like to be in a cancer family: there is no reprieve.

The account of Elisha’s experiences with ovarian cancer is particularly gut wrenching (follow up on her here and here). It seems noteworthy that in the two BRCA1/2 documentaries that have been made–Pieces of Me and Joanna Rudnick’s In the Family–women in their 30s delayed prophylactic surgery and then faced cancer diagnoses a few years latter (in Elisha’s case ovarian cancer and in Rudnick’s case breast cancer). Mastectomy and oopherectomy are obviously very difficult, very personal decisions and not everyone chooses to go those routes. However, these films suggest that if you have chosen surgical risk reduction, then you should act sooner rather than later at the same time that they show that actually following through with surgery can be easier said than done.

Adding to the complexity of this issue is the fact that prophylactic mastectomy is considered “elective surgery” in Australia and not covered by the healthcare system there. This situation puts an appalling financial burden on BRCA+ Australian women to pay for their own risk-reducing surgeries if they can. In worst case scenarios, it makes risk-reducing surgery unavailable to those who can’t afford it.

UPDATE: I just discovered that you can rent the entire film on Amazon. Woot!

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]

Anti-feminism in Kevin Davies’s and Michael White’s Breakthrough

Image

One word: Meh. Then a few more: what the hell?

First, the “meh.” Kevin Davies’ and Michael White’s Breakthrough: The Race to Find the Breast Cancer Gene (1996) is a boring book, even for someone as thoroughly obsessed with BRCA1/2 as myself. Breakthrough was published in 1996, so it must have been rushed into publication pretty fast after the discovery of BRCA1 in 1994. In fact, it barely covers the discovery of BRCA2–by the book’s end, BRCA2 has been “localized” on chromosome 13, but not yet located (as it would eventually be in 1996). The book may have been stronger if the authors had taken some more time to write it.

Davies and White trace the competition among scientists to find the breast cancer gene in the early 1990s, but while the discovery itself is historically important, many of the players involved are not that interesting. What’s more, the authors largely adopt an “objective” journalistic tone and they frequently miss the chance to engage in some down and dirty cultural analysis or critique. For example, they discuss Mark Skolnick’s founding of Myriad Genetics, but largely let him off the hook for allowing the profit motive–AKA his greed–get in the way of affordable mass testing and research. Gene patenting was the hot button BRCA+ issue for over 15 years before the Supreme Court invalidated Myriad’s patents on our data in 2013. Davies and White barely touch the surface of this issue.

Much of the information that the authors present on breast cancer and BRCA1/2 is out of date by now. It’s been 17 years since it’s publication, so that’s to be expected. Still, the book is often painfully and self-consciously 90s with its frequent comparisons of BRCA1 to HIV, Hillary Clinton’s attempts to establish universal healthcare in the United States, and an overwhelming sense of optimism. All that’s missing is references to the “global village” and a rhapsody about the World Wide Web. The authors believe that the discovery of BRCA1 is going to revolutionize breast cancer prevention, detection, and treatment. In the end, I’m struck by how much hasn’t changed about breast cancer treatment in nearly two decades.

Now for the “what the hell?!” parts. The book ends with a rumination on the state of breast cancer culture in 1996. The authors opine that breast cancer has taken center stage and is receiving more funding than ever. And then, bizarrely, they start attacking feminism.

For instance, in one baffling passage they note: “Curiously, the preventive mastectomy option is significantly more common in the United States than in any other country in the world, but the reasons for this are unclear. It has been said that the preventive mastectomy response smacks of hysteria or is an expression of some convoluted radical feminism” (245). The passage begs the questions: who actually said these things that have “been said”? The passive voice of this quote (“it has been said”) makes it so that Davies and White can make this ridiculous argument without seeming to make any argument at all. I can only imagine that the convoluted logic here is that feminists supposedly reject femininity and therefore want to destroy the secondary sex characteristics that seem to define femininity. That, of course, is absolutely absurd, since feminists have long fought for women to have the freedom to make uncoerced decisions regarding their bodies and health.

And then things get more weird. The authors critique Gloria Steinem for not speaking out more about her own experiences with breast cancer, as though she’s obligated to discuss the details of her health with the entire country. And this bit of what-the-fuckery:

“According to conservative author Midge Decter, NOW is simply not interested in breast cancer, ‘Theirs is a leftist, radical agenda–not a woman’s agenda,’ she claims. ‘And what’s wrong with cancer as a cause from the point of view of the feminist movement is that they can’t identify anybody who did it to them. They’re therefore just not interested.’

Feminists have been used to taking control of their own destiny, of fighting and issue head-on. When it came to breast cancer, they were trapped by their own philosophy. Feminist lore during the 1970s made it clear that the way forward was for women to look after themselves and to control their own future, so any movement endeavoring to funds from the establishment to help cure women of a disease over which they have naturally had no control was anathema to the feminist ideal” (256-7).

WRONG, WRONG, WRONG. Davies and White need a lesson in breast cancer history: as I’ve said before, second wave feminism started the breast cancer movement via the women’s health movement of the 1970s, which was an explicitly feminist enterprise. This is well documented. Furthermore, feminism is not about individual women taking control of their individual destinies. It’s about achieving equality and opportunity for women as a class–that is, for all women, not just individuals. For this reason, feminists have a huge stake in breast cancer culture and research.

It’s also pretty funny to hear the National Organization for Women being called a “radical” organization, when it is frequently attacked for being too mainstream. It is, in fact, a “liberal feminist” organization and by definition not radical. But hey, what else can you expect when the authors consider an anti-feminist wingnut like Midge Decter to be citable expert. Decter, by the way, wrote a book called The New Chastity and Other Arguments Against Women’s Liberation (1972) and founded the reactionary Independent Women’s Forum. She about as much of an authority on feminist attitudes towards breast cancer as Anne Coulter or Fox News.

Adding to the annoyances of the book, Davies and White seem to have an anti-abortion agenda as well, and the issue of abortion pops up repeatedly throughout the book in odd places.  It turns out Frances Collins, another BRCA1/2 researcher and current director of the National Institutes of Health, is also anti-abortion. They all seem concerned that BRCA+ women will start aborting BRCA+ fetuses, because clearly women can’t be trusted to make sound ethical decisions about their bodies and their fetuses. This fear has not panned out over the last 17 years at all.

There are more problems with this book, but I’ll spare you the details. To summarize: Breakthrough sucks and is annoyingly anti-feminist. Learn from my mistakes and don’t read it. It’s a waste of time.