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On Being Your Own Advocate In A Broken System & Why I Tried InsideTracker
This is not a sponsored post. Just FYI.
Today is Monday, April 10.
And on Monday, April 10, I should be home giving myself my next Stelara injection.
But in spite of the fact that today is Monday, April 10, I am not at home giving myself my Stelara injection.
Even though today is the day my doctor told me to have the shot. And even though I spent weeks making calls to finally get this medicine fully approved by my insurance. And even though I’ve been calling the pharmacy that delivers the medicine every single day for the past two and a half weeks to schedule this delivery.
So yes. In spite of the date, in spite of my doctor’s orders, and in spite of the fact that my body has made it pretty clear that it needs this medicine right now to stay healthy, I don’t have the Stelara-filled vial in my possession.
Because there are moving parts in a broken system, and I have no power over any of them.
I got approved for Stelara sometime after my initial infusion in November (for which I later got a $55,000 bill that took weeks to settle). Now, every eight weeks, I get a pre-filled syringe of Stelara delivered to me at home, and I administer the injection myself.
And in theory, this is how the process is supposed to work:
- My doctor writes the prescription for Stelara to be approved by the insurance on an eight-week period.
- The pharmacy (chosen by my doctor’s office) gets the order to fill the prescription every eight weeks. But before it comes straight to me, it needs to get get approved by the insurance company.
- The insurance does its job and approves the medication since, you know, doctor’s orders.
- The pharmacy, now that it has the authorization, calls me to schedule the delivery.
- I am thrilled because I’m going to get the medicine that has put my Crohn’s into a remission-like state. No stress needed!
But it has never actually worked that way. Every eight weeks there’s some hiccup, and every eight weeks I find myself calling a million different people, none of whom can actually explain the holdup or help me. I sit on hold, I re-explain my situation, and I try my best to channel my inner yogi and breathe, but ultimately I end up stressed and frustrated because I just want my medicine.
This time around, the holdup seems to be that someone at the insurance company “made a human error” and entered my approval in the system to be for every 64 days instead of every 54 days. And apparently you can’t just open up the computer and correct your easily fixable error.
Feel free to roll your eyes if you work in healthcare or insurance and understand all this and see how, yeah, there is a lot of red tape and I’m misunderstanding. But what I understand is this: I am a woman with a chronic illness. I have a medicine that my doctor wants me to take. And people who are not my doctor are preventing that from happening.
Crohn’s flares are brought on by stress? Well let’s take a look at what I’m stressed about it! It’s you, healthcare system! You’re supposed to be helping me and making me better, but you’re not doing a very good job. (And considering what Brian and I pay every month in insurance, you’d think this wouldn’t totally be the case.)
Since working full-time, then going freelance, and now being on Brian’s company’s insurance, I’ve experienced many different healthcare companies with various benefits and customer service representatives, and they’ve all come with their share of frustrations. (Oscar had the fewest actual benefits — and stopped serving New Jersey, which is part of the reason I went onto Brian’s insurance — but had the best customer service and was the most affordable. Oxford, which I’m on now, is stupid expensive, but is one of only two companies accepted by my GI.)
Venting is not productive, I know. Negativity doesn’t breed progress, I get that. But sometimes it feels really good to air my grievances — and there is something productive to come of this, even if it’s not directly related.
Perhaps the greatest lesson I’ve learned during my time with Crohn’s disease (24 blissful, steroid-laced years!) is that you need to be your own advocate. People can help — there are many people whose job is to help. And some of them are amazing! But that’s not always enough.
If you want the appointment you need, the medicine you need, and the care you want, you need to demand it. You need to be a little pushy. You need to be persistent. That doesn’t mean being rude and nasty, but it does mean picking up the phone more times than you want and being a squeaky wheel. Sometimes even the squeakiest wheel doesn’t get the grease or, in my case, the Stelara. But I’m still squeaking.
Last year, when my Crohn’s flare came out of nowhere, I pretty immediately grew desperate. My longtime (and favorite) doctor had switched practices, and they insisted he wasn’t seeing new patients — even though I was a very old patient and he had personally told me he would keep seeing me at the new office. But the receptionist — the gatekeeper! — wasn’t having it. I called every single day. I left messages. And then I called again. Finally, I emailed my doctor personally. He’d given me his personal email address when he had left the practice, and even though I wanted to be respectful and not use it, I finally did. And it worked.
But I was told the next available appointment was three months away. That wasn’t going to cut it.
So I begged. I’m pretty sure I cried. I was that sick, and I was desperate, and I needed a medical professional. I finally got an appointment, and when I showed up and checked in, two other patients also checked in for 10:00 appointments with the same doctor. Another person checked in with a 10:15.
They scheduled three different patients all within a 15-minute increment. How is that conducive to good, adequate care? I felt so rushed and frustrated during my appointment. I adore my doctor and always will, but I could feel his stress and the urgency. I’d waited all this time and was basically told, “OK, you need Stelara, we’ll start the process to get it approved.” I was handed a pamphlet about Stelara — there was no actual discussion of the drug — and I was done. They shooed me into the lab to get a blood draw, and I was told to come back in two weeks for a follow-up. Of course, when I tried to make that appointment on my way out, the receptionist said the next available appointment was three months away.
“He specifically said to come back in two weeks,” I told her.
“Sorry, there’s nothing available,” was her response. So what am I supposed to do? I honestly don’t know. I persist as much as I can, but I have very little power or control.
This isn’t a dig at my doctor. He’s brilliant and kind. I’ve learned that he’s not in charge of his schedule at all. He doesn’t want to rush his patients! He’s told me that.
In all my years with various doctors, we never go into much depth about anything. We don’t review every aspect of my bloodwork. We don’t talk about preventative measures. It’s problem + drug solution, have a good day!
I often turn to the internet for help because the people who are smart and trained to help me are too busy, too over-scheduled, and too motivated by billable hours. I know that this often isn’t the fault of the doctors but rather the industry as a whole. And it’s bad.
Anyway, where am I going with this rant?
InsideTracker. You’ve probably heard about this, and this is where I’ll remind you that this isn’t a sponsored post. This is just me, as an adult woman and someone who wants to live life feeling her best, exploring new options.
Most simply put, big pharma and basic healthcare are not cutting it for me. After I got bloodwork done that day back in November, I never heard a peep from the doctor’s office. I can log in and see some of my results through the hospital’s portal, but there’s no explanation, no guide to walk you through everything…just a bunch of meaningless numbers.
So last year, my friend Jonathan (who works for InsideTracker) suggested I give InsideTracker a try.
While my doctor’s office took my blood and then did nothing with it (to my knowledge), InsideTracker took mine and broke down everything. InsideTracker tests for up to 41 biomarkers, then tells you which ones are in the optimized range (that means you’re doing great) and which ones need improvement or are in the red zone (no bueno). The team breaks down what each biomarker is (like ferritin, iron, Vitamin D, etc., explains how it affects your health, and breaks down how you can make improvements based on your specific goals.
It’s basically the opposite of working with a giant doctor’s office, where things are complicated and confusing. The InsideTracker team is small but mighty, and has MDs and registered dietitians on staff who are super helpful in answering questions. They work with athletes and most of them are athletes, which helps (and is more fun).
So for now — while I wait for my medicine and keep making phone calls — I’m excited to have additional guidelines to help me take control of my health as much as I can. Someday I want to make enough money to have a concierge-style doctor on call. I want someone who will answer my questions and who will spend more than five minutes with me. I want someone who is on time, who isn’t constantly rushing off to see his or her next patient, and who actually knows my medical history and won’t need to spend the first eight minutes of every appointment repeating it and typing it into the computer without making eye contact with me. I want a doctor who answers the phone and responds to emails without me having to go through 10 different gatekeepers to finally get a half-assed response.
Having a chronic illness is physically and emotionally draining. I can fight for myself and I can be my own advocate, but I need someone on the other side. I wish I didn’t! But I do.
All this to say — whew! — that I’m excited to be building a relationship with InsideTracker and to have some A+ care and customer service on my side. Is it a substitute for a Crohn’s disease specialist? Maybe not. But more information can’t hurt, and I’m all for getting inside my insides. (Was that gross? It was supposed to sound clever.)
NEXT TIME I’ll share my results from my latest test, but I’ve kept you here long enough for now. (Are you still here?)
BUT FOR NOW, ORDER UP YOUR OWN INSIDETRACKER TEST!
There are a bunch of different plans to choose from AND I can help you save on the cost of a test! Pick any plan and use the code ALIONTHERUN for a sweet discount. (Not an affiliate link — you get a discount, I get nothing. I just love you.) Do it before you start training for a fall race!