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

 

https://media.licdn.com/mpr/mpr/p/2/005/08f/2b4/3fc82c9.jpg

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.

mf healthcaremap p.jpg

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.”

https://s-media-cache-ak0.pinimg.com/236x/81/7c/89/817c896ac71ab401ac98517b0e3ec7e8.jpg

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.

Advertisements

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

Image: US-POLITICS-HEALTH-OBAMA
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.

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]

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