Helplessness.

There’s something about the specific flavor of helplessness I feel when dealing with bureaucracy that really really gets to me. It’s the sense that some corporate interest or bottom line is more important than real people with real problems. When I sit with this emotion I feel electrified with a messy conglomeration of rage and despair.

Dealing with the American health care system (which I will be doing a lot of in the coming months) is a prime example of this helplessness.

Case in point:

Everyone I’ve spoken to from doctors, to the genetic counselor, to friends, other BRCA+ women acknowledge that a breast MRI is the best screening tool for someone in this situation. And like any other reasonable human being I would like the test that has the best possible chance of detecting something (if there is anything to be detected). So I called up my local hospital and scheduled a breast MRI. Easy enough. Oh, and they told me I’d need a referral. That shouldn’t be a problem right? I mean I’m a woman in her mid-30s, BRCA1+, and I’ve never had a breast screening before. Wouldn’t my doctors advocate for me to get the best possible care?

Not so much.

This is the story of my quest to get preauthorization for a breast MRI. And it is a LONG one. SO I’m going to break it down to the barest of bones.

Attempt #1: I asked the breast surgeon I am scheduled to on 7/20 if she could refer me and request authorization. After all, she had asked that I have imagining done before our appointment so that she could review the findings with me. Verdict: Rejected. Rationale: We don’t do preauthorizations for new patients. But we also don’t see new patients who haven’t already had imaging done. Welcome to the healthcare hamster wheel from hell.

Attempt #2: I asked the gynecological oncologist because I just happened to be seeing him and figured it was worth a shot while I was in his office. Verdict: Rejected. Basic rationale: “That’s not my department. Ask your regular OB/GYN or GP.”

Attempt #3: I called my regular OB/GYN’s office and explained the situation to them. Verdict: Rejected…sort of. Rationale: They explained to me that in order for them to submit a preauthorization request I needed an office visit first. Their next available appointment was in 3 weeks. And they said that after that visit I would almost certainly need a mammogram first in order to get my insurance to approve the MRI…even though they know the MRI is more appropriate. (What I heard: Here, lets spend the next 2 months jumping though these hoops. Hoops that are on fire. And it might start raining gasoline.)  So this wasn’t an outright rejection really, more of a “we’ll work with you…but it’s gonna be a bit of process” that would result in me not getting the MRI until Aug or Sept at the earliest (because there’s only a 5 day window of the menstrual cycle when they do breast MRIs).

Attempt #4: I called my GP…the one who referred me to the genetic counselor in the first place. Verdict: Rejected. Rationale: The nurse from my GP’s was kind and sympathetic, affirming (again) that I absolutely SHOULD get an MRI, but told me that’s not something she could help me with. Better luck next time.

Fast forward to me sitting in my office at work after this seemingly never ending string of phone calls. Skin hot. Tears welling. Desperately texting my stepmom, a radiologist with lots of experience navigating this system (and a patient of the breast surgeon I’m scheduled to see). Like a bloodhound who just caught a whiff on the breeze…she was on it.

What happened next reminded me of those usually fruitless letter writing campaigns people do to save their favorite TV show from going off the air. She starts calling the nurse practioner from the breast surgeon’s office. Her close friend who is a colleague of the breast surgeon starts calling her directly. She gives me the NPs number, and as uncomfortable as it makes me, I call too.

“We’ve gotten a lot of calls on this matter”, the NP tells me. It’s official. I am “this matter”. “We’ll get back to you by the end of the day”.

A few hours later, my phone rings. I’m in a meeting at work and it goes to voicemail. The NP asks me to call back. I do.

“We were able to get preauthorization for your MRI. You’re all good to go. Here, jot down this authorization number.”

And there it is. Seemingly so simple. The NP explained the office’s reasoning for not typically getting pre-approvals for new patients, and to be fair, it does make logical sense. She told me that they’ve had many high risk women go for MRIs, get an all-clear result, and then never follow up with the doctor. “I have a feeling we’re not at risk of that happening with you”, the NP said. No kidding.

So even though this chapter of my story technically has a happy ending, I’m getting my MRI as scheduled this week and then meeting with the breast surgeon the week after, I am still angry. Furious is probably a better word for it actually.

Why? Because this system is so obviously and terribly fucked up. I am beyond grateful to have the resources and connections I do that made it possible for me to scheduling this screening ASAP, but I know I am not the norm in this respect. If I didn’t have multiple people advocating for me who happen to be doctors (not MY doctors, mind you), I would be waiting at least 1-2 more months for testing. There are, I’m sure, very real cases where things like this could be the difference between life and death. Between identifying an aggressive cancer in it’s earliest stages or after it has metastasized. Even when several doctors agree on the next right step, it can be nearly impossible to go from point A to point B in a timely fashion due to the sometimes nonsensical procedures demanded by insurance companies.

I get that insurance companies are businesses and businesses need guidelines. I also get that doctors have liabilities and are often at the mercy of what insurance companies demand. But I also get, and feel so acutely in this moment, that patients are people. Not just amalgams of demographic information and statistics, and I just wish there was a way we could be treated as such. Period. End of rant.

(But not really. Expect more on this topic when I write about why it took me 10 years to get my genetic testing done. Spoiler alert. It also involves the failings of the insurance industry.)

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