BRCAnomics: Who Needs Anesthesia Anyway?

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!

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.

Sexualizing cancer risk

Have you seen the The Cancer Sutra website? It promotes having people check their partners for cancer during sex.

“Because fear of cancer can be as bad as cancer itself.
Because the earlier you detect cancer, the greater the chances
of treating it successfully.
Because fear, like cancer, may have the power to spread”

The idea that “the fear of cancer can be as bad as cancer itself” isn’t new to high risk women. Studies have shown that testing positive for a deleterious BRCA mutation has the same psychological impact on a woman as being diagnosed with cancer. But Cancer Sutra isn’t for high risk women, or even for women in general. It’s for everyone, regardless of gender or risk.

I can’t help but think of Maren Klawiter’s work on the biopolitics of breast cancer. Klawiter talks about how medicalization has sucked us all into the breast cancer continuum. Regardless of our family histories, our genes, etc., every woman resides on the continuum. We are all risky subjects. We’re taught to fear cancer and fear our potentially-cancerous bodies from an early age: to monitor ourselves and submit to screening in order to be good little patients. There’s a lot of money to made off risky subjects.

Of course, cancer and sex do overlap. Women who’ve had breast cancer and women who’ve had mastectomies must confront the knotty relations between cancer and sex all too often. That’s inevitable when dealing with surgery to an erogenous zone as highly fetishized as the breast. But this campaign is different: the Cancer Sutra wants people without high risk, without a diagnosis, without post-surgical or post-treatment bodies, to sexualize cancer. And it’s all wrapped up in a glossy package with pro-sex, queer friendly prints for sale.

The Cancer Sutra shows just have far the discourse of cancer risk has seeped into the most intimate corners of people’s lives. Now it’s not just women being targeted. As we’re constantly being reminded on breast cancer social media, men get breast cancer too–and prostate cancer and testicular cancer, etc. (you gotta love the insistent “WHAT ABOUT US MEN!” talk that irrupts in every women-dominated space). We’re beyond the breast cancer continuum here. Now all human beings can live in a constant state of cat-like cancer awareness.

Sure, a lot of people get cancer, and telling people to look out for it might seem like a no brainer. However, once again individual solutions are being posed to the systemic problem of the cancer epidemic. It’s awfully convenient, given the ruthlessly expanding cancer continuum and the ever hungry cancer industry, that we’re told to take individual responsibility for a phenomenon so very far outside of our personal control.

Eat right, exercise, think happy thoughts, and you won’t get cancer. Screen constantly, report for checkups like a good little soldier, and you won’t get cancer. If you do somehow get cancer, then it will be caught early and you’ll be a survivor. If you don’t, your cancer will be caught late, your prognosis will be bad, and it will be your own fault. Popular discourses on cancer focus on individual responsibility and individual blame. It’s much easier than fixing widespread environmental pollution, contaminants in our food and personal care products, genetic mutations, and just plain old bad luck. It’s also a lot cheaper.

The Cancer Sutra promotes the idea that groping around your partner’s body to feel for tumors is fun and sexy. Nevermind that it doesn’t actually tell people what they should be looking for during all this hot sweaty orgasmic DIY cancer screening. Nevermind that it suggests early detection is effective for all cancers (it categorically is not). Or that it suggests all cancers act alike (they categorically do not). Or that it suggests all cancers progress neatly from stage 1 to stage 2 to stage 3 to stage 4 (the don’t). And that it suggests individuals can interrupt that tidy progression to save their own lives (sometimes, often not).

If all that wasn’t troubling enough, the Cancer Sutra promotes the idea that we–each and every one of us–should be thinking about cancer rather than pleasure during sex, or rather that we should be finding pleasure in thinking about cancer during sex. How perverse is that?

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

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.

 

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

 

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.

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:

• the diagnostic mammogram that insurance refused to cover (even though I’m BRCA+ and even though I had a suspicious lump that needed to be screened) that led to the hospital suing me and garnishing my wages for two months
• the exploitative costs that some reconstructive surgeons charge to desperate women with cancer or BRCA mutations
• the crippling debt I took on when I chose prophylactic mastectomy with DIEP reconstruction
• the fact that members of my immediate family cannot afford genetic testing to see if they too are BRCA mutation carriers because they don’t receive health insurance through their jobs and don’t qualify for Obamacare

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.”

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.

Precision Medicine: What I Want

If I volunteer my data, I want the results back–fast. I want to short-circuit the lengthy dissemination of research results currently in place. I don’t just want my data to benefit future generations. I want it to benefit me, as soon as possible.

I want privacy. Explanations that data cannot truly be safeguarded are not good enough.

I want to be able to take action based on what I learn about my genome. I want protections beyond GINA, particularly for life insurance and disability insurance.

I want risk reducing surgeries to be covered by insurance companies in the event of a positive BRCA diagnosis. Right now, they aren’t required to cover it.

I want genetic testing on demand, with second opinions available, and covered by insurance.

I want medical literacy programs, so that patients can fully engage, have truly informed consent, and make good health decisions based on big data. I want doctors to be well educated about genetic issues.

I want far greater recognition of the ways that socioeconomic status effects access to data and healthcare. I want all people to benefit from volunteering data, regardless of socioeconomic status. I don’t want our data making corporations rich while average Americans can’t afford the innovations made from that data.

I want universal healthcare. Economic inequality is the number one public health issue facing Americans right now. There is a very real danger that the masses will volunteer their genomic data but not be able to afford the medical innovations that result from that data. We cannot allow precision medicine to become the healthcare of the rich.

I want genomic data to be shared, not hoarded by corporations as Myriad Genetics has done in the past.

I want to look at the leadership of precision medicine and see more women, more ethnic minorities, more patient advocates. I want women and ethnic minorities to be well represented in the one million volunteer cohort.

I want clear, accessible pathways for patient involvement in shaping precision medicine. I want to be included. I don’t want to be an afterthought. I want to help shape the future of American healthcare.

What do you want?

 

Precision medicine: genetic data doesn’t mean shit if you can’t afford to use it.

Obama just unveiled an ambitious “precision medicine” plan and the White House is diving into precision medicine head first: epatients! genomics! big data! sexy sexy science! I guess it’s no surprise that Obama would want to jump on that bandwagon, but I’m skeptical as ever.

I’m not a fan of the idea that more technology and more bureaucracy is inherently better. BRCA+ women often get held up as examples of the benefits of personalized medicine. However, genetic knowledge doesn’t automatically give individuals the tools they need to manage their risk. In 2015, the best HBOC women can do to prevent cancer is choose among variations of the “slash/burn/poison” methods of yesteryear. While BRCA mutations have been fairly well studied for over twenty-five years, women’s options for preventing hereditary cancers have not improved much.

Even within the limits of the surveillance, chemoprevention, and risk-reducing surgery triad, many women cannot afford genetic testing or risk management. Multiple members of my own family have been unable to get tested for our particular BRCA mutation because they can’t afford health insurance, not even Obamacare, despite being employed. If my relatives scrounged together enough money to pay for genetic testing out of pocket, then they certainly wouldn’t be able to afford risk management in the wake of deleterious test results.

There are a lot of systemic problems with healthcare in the United States that need to be resolved now. Many Americans still don’t have affordable health insurance, paid paternity leave, access to short and long term disability, etc.–basic human rights that are taken for granted in Europe. Something as quotidian as childbirth often sends Americans into massive debt, never mind a major heath issue like a cancer diagnosis or a chronic illness.

At the moment, I am still suffering the financial fallout of choosing prophylactic mastectomy. And “suffering” is not an exaggeration here. I’ll be paying off the medical debts I incurred with PBM for at least two years, even though I have a good job and relatively good health insurance. In a lot of ways, I’m lucky that I could take on and manage this debt: I had access to exceptional doctors and an overwhelmingly positive experience. It’s a pretty sad state of affairs when medical debt is a privilege.

To me, these socioeconomic issues are far more pressing than personalized medicine. Massive reforms are long overdue and socioeconomic inequality in the United States is getting worse and worse. What good is genomic data if patients don’t have the socioeconomic means to put it to use?

Obama’s precision medicine plan reminds me of George W. Bush’s equally ambitious global AIDS plan, another public health initiative that was unveiled towards the end of a second presidential term. In theory, Bush Junior’s AIDS initiative sounded fantastic: billions of dollars directed at fighting AIDS in Africa, the massive distribution of AIDS drugs, new condom promotion programs, etc. In practice, however, Bush’s AIDS initiative was rushed and poorly implemented. The phrase “pissing into the wind” comes to mind.

Precision medicine is an enormous undertaking that requires careful planning. I don’t have much faith in the ability of government bureaucracies to efficiently plan and execute something so socioeconomically and ethically fraught. If Obama’s precision medicine plan is successful–and it will be a long time before we can adequately judge whether or not it is–then there are still massive hurdles to improving conditions for patients on the ground.

Maybe Obama’s precision medicine is the first step towards giving people better options. For now, we should be wary of getting caught up in the hype of precision medicine. Yes, it could lead to some great things for the HBOC community, but we need to recognize the immense challenges it poses.

If anything good is going to come out of this initiative, then BRCA+ advocates are going to have to stay on their toes, push hard for patient input, and lobby for improvements in healthcare access–that means, vehemently supporting universal healthcare, paid paternity leave, and other socioeconomic improvements  to healthcare access for the poor, the working class, and the shrinking middle class.

After all, genetic data doesn’t mean shit if you can’t afford to use it.

THIS times 1,000

Posting This One Again for Reasons Part 2.

Should we stop telling BRCA+ women to do ovarian cancer surveillance?

FORCE has a new webinar featuring University of British Columbia oncology professor Dr. Jessica McAlpine on the “Pros and Cons of Hysterectomy at the Time of Risk-reducing Removal of Ovaries and Fallopian Tubes.” Like all FORCE webinars, it’s worth watching.

During the Q&A, someone asks Dr. McAlpine why physicians continue to recommend screening despite the fact that it’s ineffective at diagnosing ovarian cancer (check around the 46:30 minute mark). Dr. McAlpine answers that “three fantastically well-run trials” have shown just how ineffective ovarian cancer screening is. She continues:

“I don’t think anyone’s convinced that screening makes a difference. I practiced in a center in the U.S. where they routinely recommended it, but I actually don’t think that’s correct. I think we don’t have any evidence to suggest those improve things beyond a standard pelvic exam. I think it comes down to prevention, which is you know the focus here here, risk-reducing surgery and otherwise. So I guess, why do doctors suggest it? Probably because we’re frustrated–some physicians are frustrated by their inability to offer anything more. But I think at the end of the day, the studies show an increase in unnecessary surgery with those screening modalities and that it didn’t save lives. So I would have caution with using those modalities.”

Dr. McAlpine’s response reminds me of a rather shocking slide that Sloan-Kettering oncologist Dr. Noah Kauff showed at the Joining FORCEs conference in Philly last summer. It illustrated that BRCA+ women who undergo regular screening for ovarian cancer actually have worse survival rates than those who don’t. 

The ineffectiveness of ovarian cancer screening is very well documented in scientific studies. I also have written a lot about the ineffectiveness of screening for ovarian cancer and my own run-in with what turned out to be unnecessary surgery last year:

1. Pelvic exams are pointless, like everything else.
2. HBOC Threat Level Orange
3. Oophorectomy Sucks

Still, it’s rare to see someone in the greater HBOC community as prominent as Dr. McAlpine so openly admitting that ovarian cancer screening does. not. work. at. all.

What she doesn’t mention is the gut-wrenching anxiety screening causes multiple times a year; the time-consuming appointments and endless waiting rooms; or the onslaught of co-pays and other expenses–just to give BRCA+ women false reassurance.

All this makes me wonder: Why are doctors still recommending ovarian cancer screening to BRCA+ women when reputable scientific studies prove it’s useless? Why is the leadership of the HBOC community continuing to recommend it? Why am I still following through with ovarian cancer screening twice a year like a good little girl scout when I know it’s pointless or even harmful?

I know these are surprising questions for many people in the BRCA+ community. Those of us who are actively involved in HBOC advocacy know the drill: if you come from a cancer family, then getting tested, getting screened, and maybe getting surgery will empower you and save your life. It’s a reassuring soundbite, but it’s not entirely true, because we don’t have effective methods to detect early-stage ovarian cancer and the only way to save the lives of women at high risk for it is oophorectomy.

I’m considering stopping nearly all ovarian cancer screening. At this point, the only ovarian cancer screening that seems worth doing is the CA-125 test. It too is highly problematic and unreliable, but a recent study showed that it has some promise of detecting cancer once it has been administered for many years to establish a personal baseline.

We need to have an honest conversation in the BRCA+ community about whether or not we’re going to continue to encourage women to undergo psychologically, physically, and economically costly ovarian cancer screening that we already know does not save lives.

[This quote is probably misattributed to Carl Sagan, but the point stands]