Thread by @DeviousDwyer

Today’s story about being a professional sick person is all about how I almost lost more than $75,000 in a morning. No, really.

As I was waiting for the nurse to call me back for my infusion this morning, I got a phone call. #crohnsdisease #ibd 1/24 (Long thread apologies)

It was the financial office for my infusion center. Funny, I replied, I’m sitting right here waiting for my drug. He said, that’s why I’m calling. You can’t get your infusion today. *cue record scratch, heart pounding stomach dropping panic onset* 2/24

I switched to this center less than a year ago because of how horrific my previous center had been. They’d messed up my prior auths, submitting late several times, cancelling my appointments because of their mess ups, never owning up to their mistakes, gaslighting me. 3/24

The nurses at the old center blew my veins, the front desk person was rude/incompetent, etc.. Moving to my new center was an enormous quality of life improvement. They got a new prior auth from my insurance, I got my approval letter and was good to go back in February. 4/24

Apparently, my insurance, UHC, refuses to cover infusions at outpatient-hospital center. News to me, as I’d called my insurance several times to ensure full coverage for this group before moving, AND the infusion center had successfully put through my prior auth. 5/24

In March, UHC sent me a letter saying that I couldn’t get care there anymore. I never saw that note. Know why? Because it was a single paragraph hidden at the bottom of a 2 pg letter that started with “Hooray you’re approved for your drug! Isn’t that awesome?” *paraphrased. 6/24

I put that letter in my “approvals” file folder and moved on, enjoying three more infusions in June, August and September. The most dynamite nursing staff, comfy rooms, excellent care. All was radio silence from UHC after March. No other notifications to me at all. 7/24

Cut back to me, in the middle of the waiting room, raising my voice to impolite levels of fury and telling this idiot on the phone that there was no way in hell that I was going to be on the hook for more than $75,000 of care because THEY didn’t submit the right paperwork. 8/24

The staff offered me a conference room as I frantically dialed my insurance company & spent 45 minutes tracking down all of the EOBs (explanation of benefits), all the appeals submissions, prior authorizations that had been submitted in August and tried to be back dated. 9/24

Bless that representative who bore the brunt of my intensity. I was not in a good place. When we finally got to the infusion claims, it turns out that UHC had penalized them for continuing to provide care to me. Which means that I DO NOT HAVE TO PAY for the denied claims. 10/24

Which is pretty great because my infusions can cost $25,000 each. Sometimes more. Let that sink in. $25k every six weeks, just to keep my body from trying to nuke itself. Without this drug, I’m only a few weeks away from catastrophic hospitalization for organ failure. 11/24

I found out last week that I’m in the start of another flare with active disease in my terminal ileum again. Waiting too long to get my infusion means that my flare will increase, inflammation will become difficult to control and I will become very, very sick. 12/24

Crohn’s is not a disease that you fuck around and find out with. It’s a disease that you hit with a sledge hammer and never let your guard down around. So what do I do now? I need another infusion center or home service that can do a new patient prior auth ASAP. Impossible. 13/24

Thankfully I have an appointment with my amazing GI tomorrow. We were already going to talk about switching meds because if Infliximab isn’t keeping me in remission (I’ve been flaring on and off the whole almost-four years on it), then maybe we need to try something else. 14/24

Maybe I’ll be able to switch to home injections like Humira. Which is the dream. But it means burning bridges with Infliximab. As soon as I stop taking this drug, I’ll start developing antibodies to it, which means I very likely will not ever be able to take it again. 15/24

There are some studies showing recapturing drug response is safe and possible, but there’s a real danger of anaphylaxis if I have to try it again in the future. Also, there aren’t so many other biologic drugs approved for my subtype of disease, which is terrifying. 16/24

I need to be on some sort of immunosuppressing drug for the rest of my life. Stopping Infliximab after only 3.5 years sets a dangerous precedent, especially because this particular drug was the gold standard for people with my type of disease: perianal fistulizing Crohn’s. 17/24

But if it wasn’t keeping me in solid remission, maybe I do need to change drugs. It means steroids to tide me over, since these drugs can take time to kick in, & because I’m actively inflamed already and need to address that before these drugs can even really be effective. 18/24

Steroids mean that I’m going to be at much worse risk for bad outcomes for COVID if I get it. Also, risk of diabetes, bone loss, mood volatility, violent tachycardia, and more. Ugh. 19/24

So I have big scary choices in front of me. Thankfully, I have a dynamite GI who has very literally been life saving for me. I trust her expertise & judgement. We’ll come to a good decision tomorrow. It’s still upsetting, but at least I don’t owe $75,000 in rejected claims. 20/24

And that’s the story about how I was pretty certain I’d have to go up against the insurance behemoth and fight not to owe tens of thousands of dollars, but in fact, my infusion center admitted their mistakes and apologized. But I still couldn’t get my drug today. 21/24

And don’t even get me started on how the morning got rolling with that same infusion center refusing to do routine lab work to check Infliximab levels and antibodies (per my GI’s orders), and instead sent me downstairs to wait for 45 minutes to get lab work done there. 22/24

If I’d only gotten the lab work done earlier. If I’d only not answered the phone. If they’d been 10 minutes later in calling me, I could have gotten my infusion and not been in such a state of extreme panic and fear. I hate this system. I hate that I have to live this way. 23/24

It fucking sucks, but it’s my life and I’m sure as hell not going to give up. And you are a darn champ for sticking with me this far. Thanks for listening to the rant. Venting helps immensely with these situations. Now I’m going to go have some ice cream. #crohnsdisease #IBD End