Before I begin, let me just say 1) I didn’t mean to leave you hanging on that last post, I swear, and 2) THANK YOU for all the nice comments and emails. February/March (Farch, as one commenter called it, which I shall use forevermore) is hard on a lot of us, huh? I’m really glad it’s almost April. Also I am (finally) feeling somewhat better, so do not fret.
But that is not why I am here today. OH HO HO HO, no. I am here today to tell you the story of why for-profit health insurance companies do not work and why when politicians start wringing their hands about how EXPENSIVE universal healthcare will be, I have vivid fantasies of setting living, breathing humans on fire. Also—in case you don’t live in Georgia or follow the news—I find it beyond ironic (like, we need a new word that means mega-ironic, please) that the state legislature here has just passed a so-called “heartbeat bill” aimed at criminalizing all abortion, because they care so damn much about LIFE, but in the meantime, everything I’m about to tell you is just fine and dandy by them because it’s not pertaining to a fetus, just my 20-year-old daughter.
Related: My favorite thing about me is how calm and collected and not at all hyberbole-prone I am in the face of dumbfuckery.
Before I go into the things I’m incensed about at this very moment, allow me to review a few related things in case 1) you’re new here, 2) you don’t remember absolutely everything I say all the time (imagine), and/or 3) you like your enraging stories to come with a full backdrop.
Background item 1: After years of small and perplexing health issues, Chickadee came home from her first year of college with a case of mono which landed her in the hospital for a week. And once the mono resolved, she just… never really got better. All of the small issues got worse and worse and new issues cropped up and thus began the Dance Of Diagnosis While On An HMO.
Background item 2: The geneticist our insurance finally allowed us to see declined to test Chickie for Ehlers-Danlos Syndrome because he could “tell just by looking at her” that she didn’t have it, which is of course how they teach diagnostics in medical school. While the most common form of EDS does not (yet) have a known genetic marker, there are 14 (ish? I think?) known types of EDS and counting, most of which can be confirmed via the genetic testing this doctor refused to order.
Background item 3: Our insurance then allowed Chickadee to see a rheumatologist who did some basic testing and then wanted to talk with her at length about how all college students are pretty stressed out, and had she considered meditation or yoga? Because we all know that stress can cause your hips to randomly partially dislocate!
Background item 4: We paid out-of-pocket to see a world-renowned geneticist who specializes in EDS and related disorders because our insurance refused to pay and we were tired of not getting proper diagnostics for our obviously sick kid. Our reasoning was that a confirmed diagnosis would be invaluable in terms of getting necessary treatment covered (hahahahahahaahaaaaaaa, I’m so silly!), and let’s just note here that I recognize how very privileged we are to be able to afford this option. Chickadee now has an only-slightly-squidgy Ehlers-Danlos diagnosis based on genetic testing which has proven not nearly as useful as we thought it would be, but whatever.
Okay. That brings us to the present, or close to it. Also, I try pretty hard not to brag on my kids because I don’t want to be That Mom, but this feels like an appropriate place to point out that in spite of the fact that this kid has been in and out of the hospital and seeing a bazillion specialists and dealing with some really hefty health complications for almost the entirety of her college career, she is now a senior in her college’s Honors program, deeply involved in multiple organizations on top of maintaining a near flawless academic record, and I am a little bit afraid the sheer weight of the various cords and decorations she’ll be wearing at her (early) graduation will dislocate one of her shoulders. Point being: This is not someone who’s chosen to lie down and wait for her health issues to resolve before seizing the world by the short hairs.
All of that said, here are a few 100% True Medical Stories I would dearly love to tell every anti-universal-healthcare-but-pro-health-regulations-made-by-non-medical-people politician while simultaneously punching them in the face.
Fun Story, The First: One of Chickadee’s EDS complications is POTS, which means her heart beats veryveryvery fast a lot of the time, but especially when she stands up. This is problematic for all kinds of reasons, including but not limited to: it makes you prone to passing out, it makes you feel like garbage, it can mess up your digestive and urinary systems (basically your fight-or-flight response is being constantly triggered, which tells your large intestine and bladder to shut down, because there are no potty stops while running from a hungry tiger), it can make regulating your body temperature very difficult, etc. IT IS BAD, is what I’m trying to tell you. So Chickadee sees a cardiologist because this is a heart issue, sort of (really it’s an autonomic nervous system issue), to try to get her heart to chill out.
The cardiologist explained that because her blood pressure is also very low while her heart rate is very fast, we would first have to increase her blood pressure (with meds) before bringing her heart rate down (with meds) because “meds which decrease heart rate also decrease blood pressure.” Thus began a fun stint on a hard-to-obtain med (often she would need to call several pharmacies to locate it) which, at the initial dosage, did absolutely nothing to increase her blood pressure, and at the increased dosage sparked a trifecta of side effects so horrible I spent a solid week on the phone, in the car, in various doctors’ offices, and even at the ER, quietly hissing at my beloved firstborn the entire time, “I love you and I have not invested all of this time and money into keeping you alive just to have THIS be the thing that kills you.” It was a special time. She has since successfully been weaned off that med.
BUT GUESS WHAT! There is a medication which is often used to lower a patient’s heart rate without affecting their blood pressure, and it’s considered by many to be the gold standard of medication treatment for POTS. We did not know about this medication when Chickie started with the cardiologist, and he never mentioned it. I found this very odd. So I brought it up at her next appointment after the whole med-trying-to-kill-her thing, and we had an interesting conversation about it. Turns out, he loves that med. It’s the best treatment for patients like my daughter. It apparently works great and has a low incidence of side effects. It’s also, to quote the MEDICAL PROFESSIONAL TREATING THE PATIENT IN QUESTION, “Just about impossible to get insurance to pay for it because it’s expensive.” Oh, WELL THEN. Cool. Chickadee is now ramping up on ANOTHER med designed to raise her blood pressure so that she can finally (hopefully) begin the Beta blockers which might lower her heart rate. That is, IF it works. Will it work? WHO KNOWS! What a fun mystery! The doc does say that if this doesn’t work, or if the blood-pressure-raising med works as it should but the Beta blockers don’t lower her heart rate (which is apparently a thing that sometimes happens), THEN we may have grounds to appeal the insurance to cover the SINGLE med which doesn’t mess with your blood pressure at all, which is arguably safer all around. Cool, cool.
Fun Story, The Second: I’m going to be vague about the details of this particular thing in the interest of privacy, but suffice it to say it involves a different medical issue which is, like POTS, a known comorbidity with Ehlers-Danlos, and (again, just like POTS), something which has a BIG impact on overall health and quality of life. Back in December—after multiple rounds of extremely unpleasant medical tests with a specialist and a failed stint on a sometimes-helpful medication which made everything worse—Chickadee had a small surgical procedure to connect a temporary device used as a treatment for her particular issue when other attempts at treatment have failed. If the device had proven successful (it did not, because this kid is also the queen of Failed Medical Interventions) (this is pretty common with EDS, actually), she would’ve had a second procedure to make it a permanent thing. Unfortunately, it was not a good solution for her, so after the trial period, the temporary device was removed.
[Sidebar: The first medical procedure Chickadee had involving anesthesia since we began the Endless Parade Of Medical Interventions was an endoscopy which ended with her waking up combative and angry, which was Not Fun for anyone involved. We now describe this to her doctors before any procedure, and I’ve learned this is called “emergence delirium” and is common in young adults, but it can sometimes be avoided if you let the anesthesiologist know the patient is prone to it. SO! Since then, my darling stubborn cactus of a girlchild has woken up from every single surgical procedure docile as a lamb and thoroughly DELIGHTED to see me. “Ohhhhh! Hi, Mama! Hi! I LOVE YOU!” she croons, even though sober-Chickie hasn’t called me Mama in years. Drunk-Chickie thinks I am the greatest thing since sliced bread, and I am here for it. It is literally the SINGLE silver lining to all of this crap.]
Where was I? Oh! Right. So the device was implanted over winter break, in December, and removed in January, before she went back to school. We tried, it didn’t work, on to the next thing.
And then we started receiving ominous bills. Because of course we did! Now, if you have managed care health insurance like we do, you likely know the routine: You receive a big bill that says something like, “This is not a bill, we’re just letting you know that this is what was charged and your insurance has been billed!” And if you are me you put said not-a-bill in a stack on your desk and hope that’s the end of it. But then we got another one, only this next one said the insurance had refused payment, and this was still not-a-bill because the claim was being appealed and they needed more information from the doctor. Um, okay. But then there was another one, saying the appeal had been denied and perhaps we should contact our insurance. And THEN I got a phone call from the doctor’s office from a VERY apologetic woman who explained that the appeal process had been exhausted and could we please call the insurance company to see if they would listen to us? And I laughed, I LAUGHED, because what could we possibly say that isn’t already, I don’t know, IN THE MEDICAL CHART? But she was serious.
The bill in question, by the way, for the 15-minute surgical procedure, is for $16,000. I mean, respect to the insurance company, I guess, because that’s a big number and I don’t want to pay it either.
So I called the insurance company yesterday, and I talked to Vicky. Vicky is GREAT, y’all. Seriously. Vicky for president, because Vicky honestly seems to want to help us get this resolved. I spent over an hour on the phone with Vicky, and while I guarantee you that the insurance company is not paying her enough, I do think they could save themselves a lot of money and time and employees by not being so INHERENTLY TERRIBLE in the first place, y’know?
The doctor’s office told me that the appeal was listed as denied because Chickadee didn’t take the recommended medication for a full 12 months. But… she took it for a month (maybe even two?) and it made her WORSE so it was discontinued. Trust me when I say a full year of that med would have—I AM NOT EXAGGERATING—caused major organ damage at the very LEAST, if not resulting in actual death. This is in her chart, of course, but the hope was that the actual patient (or, in this case, the patient’s angry mother) relaying this information might make a difference.
But Vicky told me that’s not what she was seeing on her end. On her end, she said, she was seeing that the doctor had failed to request a pre-authorization for the procedure. So she called the doctor’s office, and then came back to tell me that the office is claiming they called and were told they didn’t need one. There’s more, but suffice it to say that VICKY IS ON IT, she promises to call me back later this week after unraveling all of this, and we are very much hoping not to be on the hook for $16,000.
In the meantime, please take a moment to sit with the reality that my chronically-ill 20-year-old who is just trying to live her life was asked by the doctor’s office which has thus far been unable to resolve her medical issues (but at least has made her very uncomfortable in the process!) to please call her insurance company and beg for this bill to be paid. I hope this makes you as uncomfortable as it makes me, because WHAT THE WHAT, people.
Fun Story, The Third: While home doing the Winter Break Tour Of All The Doctors (not to be confused with last week, which was the Spring Break Tour Of All The Doctors), Chickadee went ahead and saw her primary care doctor, who is also my primary care doctor, to go over a few things, get new referrals, etc. Anyone on a managed care plan know that basically the ONLY thing you can do without a hassle on an HMO is see your primary care doctor, right? She saw the doctor. She paid her copay.
… and then we got a bill in the mail about a month later. Soooo I called the billing office for this particular doctor (conveniently located in Texas because Reasonsâ„¢) and said, “Hello, we have this bill, but I don’t know why we have this bill.” I spoke with a very nice customer service representative who did a lot of clicking around on her computer for about half an hour, and eventually she told me that they had coded it wrong when they sent it to the insurance company; it was their error, they would resubmit.
Thank goodness that one was so easily resolved! HAHAHAHAHAHAHAHAAAAA!
Listen, I shouldn’t complain, because it’s not like this particular bill is for $16k like the other one, but when the SECOND bill arrived yesterday, this time covered in YOUR PAYMENT IS PAST DUE language, I was Not Pleased. I called the billing department in Texas (again) today and explained what I had been told the first time I’d called with the first bill. This rep clicked around a while and said, “Well, I’m going to need you to call your insurance company.” When I asked why, she said, “It says here that the doctor’s address needs to be updated and that must be done by the patient.”
First I made the same face you’ve seen on a hundred memes when someone is trying to process information that claims down is up and vice versa. Then I managed to sputter, “That… that cannot possibly be a thing. That makes no sense.” But the rep claimed that this was the only way to get it resolved.
So. I. Called. The. Insurance. AGAIN. As I was going through the seventeen required menus to reach an actual human, I wondered if I would reach a rep as kind and helpful as Vicky had been yesterday, because—while it’s all still a giant clusterfuck and I’m not sure it will be resolved in our favor, which is really the icing on the cake when you’re dealing with these sorts of medical issues in your loved ones—at least I’d felt like it was progress. I was connected to a rep, and that rep said, “Thank you for calling [Giant Evil Insurance Company], my name is Vicky, how may I assist you today?”
“Vicky!” I shrieked. “I just talked to you yesterday! What are the odds of getting you AGAIN? THIS MUST BE MY LUCKY DAY!” Poor Vicky. She should be very flattered but I think she was a little scared. Once I reminded her of why I was SO excited to talk to her again, she remembered me, and with Vicky-like ruthless efficiency, she began looking into this particular unpaid claim.
First, I told Vicky what happened when I called Billing, and she started laughing. If a provider address needs to be updated, that can never be handled by the patient, anyway, she said, so what the billing rep told me made zero sense. Next she told me the claim had never been resubmitted. AND THEN—I hope you’re sitting down—she told me that it appeared the bill hadn’t been paid because this doctor is out-of-network on our plan.
“Vicky,” I said, a small tear forming in my eye because I feel like Vicky and I are close now and this was not what I’ve come to expect from her, “That’s her PRIMARY CARE doctor. Also it’s MY primary care doctor. I’ve been seeing her for forever. YEARS. The one time we had a doctor that moved out of network y’all sent us no fewer than 10 letters warning us that this doctor would no longer be covered. I promise you this doctor is in-network. Seriously.”
Vicky had stumbled, for sure, but Vicky got right back up again. “Allow me to place you on hold for a moment please,” she said. When she came back, she apologized profusely, said that I was absolutely correct, and she was going to need to escalate this to get it taken care of but that was no problem whatsoever. ATTAGIRL, VICKY! Clickety-clickety-click, Vicky typed away for a bit, and then she said, “You know, you are always very kind to me when you call, and I appreciate that so much—” (I’m “always” so kind when I call, these two times I have called her, over the last two days; I mean, OBVIOUSLY, Vicky feels our connection too, amirite?) “—and I am going to tell you what I’m writing here so you understand. The problem is that sometimes when people are nice, escalation gets put aside, you know what I mean? So I am writing here that you are an ‘irate member’ because that word gets flagged for escalation. Is that okay? Because you’ve been so patient, and I am just embellishing a little to make sure this gets handled quickly.” Sooooo… Vicky told me that she appreciated my politeness but that polite people don’t get helped, so she was going to say I had been a jerk so that I would get help. That seems totally copasetic. Yep.
In the time it’s taken me to write this post, Vicky has already called me back to let me know that the (small) second bill has been resolved. She also said she’s still working on the (large) other one, and will be in touch later this week on that one. VICKY FOR PRESIDENT. She is too good for this world, and certainly too good for my insurance company.
1) What if we didn’t have the knowledge or the resources to continue fighting for appropriate healthcare for my daughter after the insurance-approved geneticist refused to fully evaluate her?
2) What if we’d had the knowledge and support to locate the doc who DID end up diagnosing her but didn’t have the money to pay for it?
3) What if I didn’t have the time and flexibility and patience to help my kid with all of these appointments and phone calls and keeping track of meds and side effects and general management of a complicated health condition?
4) What if I wasn’t the kind of persistent squeaky wheel who will spend hours and hours on the phone dealing with this stuff?
5) What if I’d never remarried and we didn’t have a second family income to rely upon as my time is spent more in the service of my supposedly adult child’s care than on my own job?
6) What if everything I just told you was the tiniest fraction of the healthcare-related bullshit we’ve been wading through for the last few years? BECAUSE IT IS.
Healthcare in America, ladies and gentlemen. This is GOOD healthcare—a plan of comprehensive coverage, and our family so much more privileged than many. This is as good as it gets short of being independently wealthy, and I’m sorry, but it is not good enough. Not even close.
I do not have a tidy conclusion to this particular screed.