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.

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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.

This Body is Political, or BRCAnomics: The “Fuck Republicans” Edition

 

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Most people in the BRCA+ community adhere to a “no politics” rule. In some ways, it’s a good rule. When election season comes, I don’t want to wade through posts by Rand Paul supporters when I’m trying to keep up to date on HBOC news. Women with BRCA+ mutations come from many political and social backgrounds; the “no politics” rule helps keep the peace.

The problem with this well intended rule is that bodies are political; cancer is political; health is political; BRCA mutations are political; and being a woman is really fucking political. The issues that BRCA+ women face when navigating their options for risk reduction are affected not only by larger socioeconomic factors like race, class, sexuality, region, etc., but also by the political climate in the countries where they live.

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The political climate in my country, the United States, is completely and utterly fucked right now in ways that limit access to healthcare for many citizens, particular women and people of color. The United States is the only industrialized country in the world without universal healthcare. See that map right there? The green countries have universal healthcare and the grey countries do not. America, you’re taking a backseat to Greenland, Bhutan, and Qatar.

At the same time, Americans spend more on healthcare than any other industrialized nation. Even with the improvements made by the Affordable Care Act, many Americans still don’t have affordable health insurance. And having insurance often isn’t enough. Many families that do have insurance are bankrupted by a cancer diagnosis or other major illness, not to mention random accidents like a car crash or the exorbitant routine costs of things like childbirth and root canals.

BRCA+ social media is filled with women lamenting the outrageous costs of genetic testing, surveillance, risk-reducing surgeries, and cancer treatments. I have written about my own financial struggles with BRCA+ healthcare here on the risky body:

I’ve struggled with the economic burdens of being BRCA+, despite having a good job and ostensibly good health insurance. And I’ve never had a cancer diagnosis either.

Now, the Republican party and its corporate allies are challenging the Affordable Care Act, yet again. They’re taking it before the Supreme Court and if they win then the 11 million Americans who’ve received health insurance through Obamacare will likely lose it. As a well-educated professional woman, I know I should use my words and craft a reasonable response to this utterly unreasonable news. Well, fuck that: all I could think when I saw this story was “YOU FUCKING ASSHOLES.”

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Obamacare doesn’t go nearly far enough, but Republicans want to take even that away from America’s poor. That’s pretty ironic, since federally elected politicians have amazing healthcare plans, subsidized by tax dollars–which means they’re trying to deny the same benefits to the people who elected them in the first place. How many BRCA+ women are voting for these men who want to deny healthcare to millions of people?

Healthcare is a fundamental human right–or rather, it’s a fundamental human right in most countries, but not mine. I’m sick of this shit.

Healthcare is political; BRCA is political. You can’t really talk about universal testing or precision medicine or breast cancer without talking about the formidable barriers to access to healthcare in the United States. You can’t be a patient advocate without supporting universal healthcare in this country. Period. Full stop. End of story.

The HBOC community needs to talk politics. It’s long overdue.

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]

HBOC is a Social Justice Issue

The NYT had an excellent article last month about African American women and breast cancer. It’s full of choice quotes, so here are a few:

  • “Over all, black women with a breast cancer diagnosis will die three years sooner than their white counterparts. While nearly 70 percent of white women live at least five years after diagnosis, only 56 percent of black women do. And some research suggests that institutions providing mammograms mainly to black patients miss as many as half of breast cancers compared with the expected detection rates at academic hospitals.”
  • “Researchers from the Sinai Institute last year analyzed breast cancer cases in the country’s 25 largest cities and found that African-American women with breast cancer were, on average, 40 percent more likely to die of their disease than white women.”
  • “Doctors and health care researchers say the reasons behind the black-white cancer divide are complex. Economic disparities that disproportionately affect African-Americans explain some of it. Years of racial discrimination and distrust of the medical establishment dating back to the Tuskegee, Ala., syphilis experiments on black men in the 1930s continue to influence health decisions made by African-American families in the South.Lack of health insurance among low-income and self-employed women was also cited as an obstacle to timely care, a problem that may be eased if some of them gain insurance through the Affordable Care Act.”
  • “I had to get cancer to get health insurance,” Ms. Singleton said, a tear rolling down her cheek. “I’ve been one of those people waiting for Obamacare, waiting for health insurance. And this is how I finally get it.”

In other words, breast cancer is a social justice issue insofar as race and ethnicity influence women’s experiences of it in inequitable ways. Although the article doesn’t really touch on genetic issues, BRCA mutations too are racially inflected: it’s well documented that some ethnic groups, particularly people of Jewish descent, are more likely than the general population to carry a deleterious mutation.

While there’s been a lot of research on Jewish women with mutations, there’s been much less on African American women with mutations. A few months ago, I wrote a post about race and BRCA1/2 that focused on black women. The post was based on an article that turned out to be filled with false information. I took it down so as not to spread more misinformation about HBOC. Still, the racial dimensions of BRCA mutations are something I’d like to know more about, but which I haven’t found much good information about. I’ll keep looking.

One source that comes to mind, however, is Joanna Rudnick’s documentary film In The Family, which tackles the question of race and BRCA mutations in African American and Latina families. She interviews a group of African American women in Chicago, one of whom explains that black women do not seek out genetic testing because they don’t go looking for trouble–presumably they have enough already.

A recent study “found that the Hispanic women had a higher prevalence of the harmful BRCA1 mutation than white women, and the highest prevalence was among young African-American women.” Other findings:

The researchers found that Ashkenazi Jewish women with breast cancer had the highest rate of the BRCA1 mutation, at 8.3 percent.

For Hispanic women with breast cancer, the rate was 3.5 percent. Among non-Hispanic Caucasians, the rate was 2.2 percent, and among Asian women it was 0.5 percent.

For all African-American women, the rate of the mutation was 1.3 percent, but for those under 35 who had breast cancer, the rate was 16.7 percent, Dr. John’s group found.

This may be obvious, but it’s also worth saying that every woman experiences her BRCA+ body differently and that these experiences are heavily mediated by race and socio-economic factors. BRCA+ women come from many backgrounds, yet the HBOC community is predominantly white. I’m not entirely certain why this is, although I have some theories that I’m mulling over. Nonetheless, white BRCA+ women–myself included–need to help construct spaces that welcome women from many different backgrounds, not only in terms of race, but also class, sexuality, etc.

Obamacare and BRCA mutations

There have been some rumblings in the BRCA+ community that the Affordable Care Act (ACA) is bad news for BRCA+ women. Specifically, some people have declared that under the ACA, BRCA+ women who have mastectomies are going to be denied reconstruction by their insurances companies. Such handwringing usually includes wailing that Barack Obama is a shockingly heartless man, whose supposedly anti-BRCA+ policies are especially appalling in light of the fact that his mother died from uterine and ovarian cancer. 

I have little patience for this particular kind of right wing scaremongering and misinformation. So let’s clear things up: first of all, federal law requires insurance companies to pay for reconstruction for all mastectomy patients, including BRCA+ women. The ACA does not change this law in any way, shape, or form. In fact, nothing is really going to change for BRCA+ women who already have their test results and already have insurance. For these women, things are going to continue on pretty much as before. In other words, BRCA+ women who choose to have risk reducing surgery will have access to reconstruction.

The big change that’s going to come with the ACA is that BRCA+ women who did not previously have insurance will now have it. We’ve all heard of BRCA+ women who were afraid that they were going to be pushed off their parents’ insurance at the age of 26 and didn’t know how they were going to afford screening; or of BRCA+ women who are self employed and can’t afford insurance at all and wondering how they were going to afford an oopherectomy; or of BRCA+ women who were on their husband’s insurance and now the husband is unemployed. When Angelina Jolie’s essay on her surgeries was published in May 2013, some of the biggest criticisms came from women who said that surgery was only a realistic option for rich BRCA+ women like Jolie who could afford it. I’ve always thought that was untrue, but now, with the ACA, it is doubly untrue. The ACA will provide affordable health insurance to BRCA+ women who could not previously afford it–the poor, the self-employed, those employed at small businesses, part timers, or just those who are down on their luck: all will now have access to the same regular screening and surgical options that insured women have always had.

And there’s more: under the ACA, insurance companies must now count surveillance for breast and ovarian cancer as “preventative care,” which means fewer copay or deductible for BRCA+ women (it varies by state). This is really important because cancer screening can be really expensive, even with good insurance. At the same time, as this article points out, the ACA is going to make testing for BRCA mutations much more affordable, because genetic testing now falls under preventative care as well. This article is even more clear: “Under health reform, insurance policies must cover basic preventive services with no co-payment. The federal government recently clarified that this includes all physician-recommended BRCA testing along with counseling related to it.”

Bright Pink has a website that goes into more detail on how the ACA will affect BRCA+ women. You should definitely check it out.

Under health reform, insurance policies must cover basic preventive services with no co-payment. The federal government recently clarified that this includes all physician-recommended BRCA testing along with counseling related to it.
Read more at http://www.philly.com/philly/blogs/fieldclinic/Angelina-Jolies-Lesson-for-Obamacare.html#eIEEstL30Sfv0JVB.99
Under health reform, insurance policies must cover basic preventive services with no co-payment. The federal government recently clarified that this includes all physician-recommended BRCA testing along with counseling related to it.
Read more at http://www.philly.com/philly/blogs/fieldclinic/Angelina-Jolies-Lesson-for-Obamacare.html#eIEEstL30Sfv0JVB.99
Under health reform, insurance policies must cover basic preventive services with no co-payment. The federal government recently clarified that this includes all physician-recommended BRCA testing along with counseling related to it.
Read more at http://www.philly.com/philly/blogs/fieldclinic/Angelina-Jolies-Lesson-for-Obamacare.html#eIEEstL30Sfv0JVB.99

In other words, Obamacare is a wonderful thing for both previously insured and uninsured BRCA+ women who will now have more power to make decisions that manage their risk.

Under health reform, insurance policies must cover basic preventive services with no co-payment. The federal government recently clarified that this includes all physician-recommended BRCA testing along with counseling related to it.
Read more at http://www.philly.com/philly/blogs/fieldclinic/Angelina-Jolies-Lesson-for-Obamacare.html#eIEEstL30Sfv0JVB.99