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]

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8 thoughts on “BRCAnomics: The Economic Costs of High Risk

  1. Yikes, I hadn’t thought of the financial implications of being BRCA+ without a cancer diagnosis! The emphasis on getting the “best” treatment from so many people seems to be misplaced when women and men don’t have the basic resources they need to treat or prevent cancer. If I had been self-employed last year when I needed my colonoscopy I likely wouldn’t have had it because of the cost–and I would probably be dead right now. Tying insurance to employment causes the under-employed to get little or no preventive care.

    PS–my post today is coincidentally on cancer finances because my hospital served me with a suit this morning. I don’t think people realize how high costs can be even when you have insurance and are employed!

  2. I feel privileged to live in the UK, where we pay for our healthcare via our income tax. That means that all of the care that I have received so far – which has included a prophylactic bilateral mastectomy and immediate reconstruction using my own tissue (ie. 11hrs under general anaesthetic and a 6-day hospital stay) – cost me….nothing. Well, nothing up front. I paid via the income tax that I pay year-in, year-out. I didn’t get a private hospital room with flowers by the bedside, but I did get the expert care I needed. My heart goes out to all who live without medical insurance or with insurance that is heavily rationed and requires you to fight. As BRCA positive women, we’re fighting against enough already, not least the fear of an early death.

  3. I have BRCA1 and figured my insurance would cover prophylactic surgeries. I was wrong.. So were the insurance handlers at my surgeons office. There are some states that it is law they provide the surgeries and others like here in good ol’ California that do not. Aetna states that it considers prophylactic mastectomy and oophorectomy medically necessary to reduce risk of cancer in high risk patients, So why doesn’t Blue cross blue shield and so many more? of course Aetna is not available here in California either.. This has been a nightmare from the start and I am tired of researching and loosing sleep trying to figure out how to be around for my son to grow. I had 7 great aunts and my grandmother die from ovarian and or breast cancer. My three aunts all had breast cancer in their 30’s.. What is the point of spending thousands on insurance every year for nothing. Oh but my insurance covers it if I live in Connecticut.. My insurance covered the testing but in the fine print stated it would not cover a prophylactic mastectomy due to BRCA+ results… I have choice words for these people who “make the rules” so to speak.. So I am looking for a insurance that does if anyone knows of any please pass it on 🙂

  4. Hi there, I read your post: BRCAnomics: The Economic Costs of High Risk but can’t seem to comment there. I’m currently trying to negotiate the legally grey operations of NOLA and was so happily surprised to see you call them out on their business practice!! I’ve been repeatedly scratching my head wondering why women are not sharing the financial issues with each other more often. If we are truly trying to empower ourselves – what are we not digging into this more?

    Would you be willing to have an off-line conversation? I’m now days away from my surgery date and would like to ask a couple of specific questions.

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