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.
In the simplest terms, InsideTracker uses blood tests (because #blooddontlie) to help athletes (and all humans, but mostly athletes) optimize their performance and reach their peak potential.
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!
As a physician and a patient, I hear you 100%. Being your own advocate is, sadly and often, the best way to get what you need. Doctors (at least I think) are often very well intentioned and mean to help. Unfortunately, we often have little control over our schedules, the front desk staff, and so on and so forth — those critical parts of the patient experience that can really make all of the difference. As a patient myself, I’ve had to fight and use “physician ties” to get what I or a family member or friend needs. And, I hate that. It shouldn’t be that hard…because if its hard for me (with friends in the area in most every field), it must be impossible for most patients! I went into medicine because I like talking with people, hearing their stories, and using what I know and can do to help solve their problems. The “system” so to speak doesn’t always allow doctors to do that. Offices and hospitals (and, umm, the government making decisions about healthcare) aren’t often run by doctors, but business men and women who see things very differently. There is so little time given to patients (and, if you’re a good doctor, usually more in demand and less time), and I truly think that TALKING with your doctor is part of the therapy/treatment (every doctor is part psychologist, I think!). Yesterday, I got to spend 2.5 hours with a patient going over her surgery and her entire book of questions (literally!). It was refreshing and rewarding to be able to provide her the care I thought she needed at this time. Of course, 2.5 hrs is a bit exceptional; I think new patients should get 1 hour to 90 minutes and re-visits 30-45 min, but that’s not always the case (I think private offices give you something ridiculous like 15 min). I was only able to do that because I’m a resident, was working at a public hospital that day, and working in a clinic with multiple residents seeing patients so the rest of the clinic doesn’t get backed up. Residency is somewhat blissful in that you can sort of practice medicine out of the financial/insurance world; I will really miss that. A lot of good doctors who want to spend time with their patients move to a cash only system so they can set their schedules and spend more time with patients….but most people can’t afford that! There has to be a better way to make medicine more humane and compassionate for both doctors and patients (I mean….when is having lunch a privilege and not a normal thing?! #residency). Ok, stepping off soap box 🙂 Great post! Please let me nkow if you did not get your Stelara! I am very concerned about this!
It is so frustrating to hear what you go through but also empowering to hear how much of an advocate you are for yourself and inspiring on top of it all. I started down the mental healthcare journey last year (and boy, is it a journey…) involving a (late) series of diagnoses of ADHD, anxiety, depression, and a whole mess trying to untangle all of those intricacies. Between therapists, psychiatrists, psychologists, my GP, the pharmacies, all on my own (shitty) insurance as a freelancer, while moving between multiple states (WHO KNEW states had different laws requiring different exams and diagnoses for prescriptions and “controlled substances” that keep me literally sane and functional?!), I feel like I have learned everything the hard way…and each time, something else goes wrong. It’s so incredibly frustrating to feel like no one is on our sides when we’re the ones just trying to be healthy and functional in ANY sense of the word. Keep advocating and being the squeaky wheel and GO YOU for making it all happen, even when it feels like a downhill battle that’s already been lost!
I work as an RD and used to work for NYU. They were RIDICULOUS with their quotas. the practices were run by MBAs who had never stepped foot ina hospital outside their business role. it was ALL about bottom line to them, and the docs are just completely beholden to that system. bonuses were based on how many patients you see above expected quota, with the aim to hit an average of 100 patients per week (THATS 20 APPOINTMENTS PER DAY). If you didn’t hit that quota, the docs would risk termination. NOT patient care-centered.
Then I started working at new york presbyterian and their docs have WAY more time with patients. appointment slots are 40 minutes (sometimes 60 minutes for new patients). The docs are so calm and casual with their patients and can really listen. Its totally about patient care here.
Just thought i’d share if your doc is caught in the NYU system. Its so terrible, particularly for a specialist. It’s one thing to have a quick and easy annual physical, another when you’re literally crapping your guts out and have a chronic disease (which they get reimbursed more for!)
YES. It’s NYU that I’m dealing with now! My doctor (and I love him!) used to be at a practice within NYP, and even though the office was always slammed and the wait times were long, I felt like I got more time with my doctor AND the entire staff knew me and was generally nice to me and caring. NYU is just…exactly what you described! The office is lovely and shiny, but it’s a mess. (And everything you said, even though I know all of it to be true, is never less infuriating to hear. 20 appointments a day. That’s gross.)
I can totally relate to this, I’ve had so many doctors that were’t /aren’t helpful in dealing with all that comes along with having an autoimmune disease and treatment. I will say that I’ve had a lot of success with One Medical (I’m in DC but they have offices around the US). The appointments start on time, most are 45 minutes which the doctors stick to (and don’t rush you out) and their admin team is great. They have called my insurance to work out any issues, even getting me a day-of MRI worked out, and they answer their emails/calls.
45 minute appointments! That sounds dreamy!!
It’s great that you are such a strong advocate for yourself, but I’m so sorry you are going through this!
I too have a chronic illness and can relate to this all too well. SO critical to be your own advocate, but also aware. Just one example I’ll share is being billed incorrectly and had to fight for a year to fix it (with the insurance company threatening to send me to collections – FUN). I’ve often felt alone and scared that if I was not as educated about my illness and what I need done, I’d really be done for, because it often feels like no one is paying now that I’m an adult (besides my parents, of course).
*no one is paying attention now
I can relate to so much of what you said here! It is beyond frustrating, especially when you clearly know and can see that your doctors are frustrated, too. I have had some great physicians who are just not able to give the level of care they want to because of the system. As far as being your own advocate and doing your own research goes, it is so true. When I was getting evaluated for back surgery, I was told by six different doctors to stop running and that I would need a surgery that would limit my mobility in my spine forever (two level spinal fusion). If I had accepted them at their word, my life would have changed forever, but I did my own research and found a physician who offered me a variety of options. I had to fly from South Carolina to Colorado to do it, but it was worth it.
Hugs! I’ve worked in a pharmacy for years and work in healthcare on the other side of the counter. As both a professional and a patient, it can be all sorts of frustrating on both sides. I hope everything gets worked out sooner rather than later.
But one tip for visiting your doctor’s office is to speak up. Ask about your results and ask him to break it down for you. Same with medication and various medical procedures/processes. Doctors are often overbooked and don’t have much time with each patient so corners can get cut, but I promise that most doctors (at least the good ones) will take the time and slow down if you just speak up and ask. Good luck. Feel better soon 🙂
Yes, I agree that I should speak up more, you’re definitely right. I tend to feel so overwhelmed by the time I finally see my doctor (and am usually very sick), so I don’t stand up for myself enough. And even when I go in with a list of questions I want to ask, I don’t always make sure I ask ALL of them — and get answers that are sufficient or are thoroughly explained to me. So yes yes yes!
I always thought my stress with dealing with the healthcare system was ptsd. My husband died from melanoma at the age of 29. The entire 10 months from diagnosis to his passing was filled with doctors, referrals, surgeries, expensive injections, clinical trials etc etc. but now almost 18 years later I realize it’s just plain old frustration. I just went through the overbooked, rushed doc experience with my toe. The podiatrist wasn’t with me for more than 5 minutes. And then I was told I had to wait for 2 days for authorization to get MRI. After 2 days I called and receptionist said ” oh I was wrong. You can go ahead and make your MRI appt. no auth needed”. But she never had any plans on calling me to tell me this? And then 11 days later was next MRI appt. I’ve been limping for 3 weeks. Compensation injuries are now popping up. But that’s life.
Hang in there!
I honestly don’t know how you’ve done and gotten through so much of what you’ve experienced. I <3 you. (And hope the limping ceases soon. Ugh.)
Go ahead…rant, scream…you need it!
I genuinely don’t want to be one of those Brits who smugly talk about free healthcare…but seriously! I LOVE the US, we’ve loved living here, but I cannot begin to fathom how this health system came into being and how the good American people have allowed it to exist for so long. It’s so broken. Our NHS is FAR from perfect, I fully admit it, but I am so grateful for it in all its imperfections. I really hope someone shakes up US healthcare in the future.
IF I WERE A BRIT, I WOULD SMUGLY TALK ABOUT THE FREE HEALTHCARE. (Should Brian and Ellie and I just move to Italy? Probably, right? UGH, FINE. Come over for dinner. It’s probs not too far from Stonehenge, but IDK.)
I can totally understand and relate to 100% of this post! I HATE the healthcare system, it’s incredible how broken it truly is. It’s all about the $$$$ not about actual healthcare and it’s really sad. I’ve never heard of Inside tracker but I’m going to check it out, so thanks for getting some useful info out there!!
I know I’ve said it before, but you would love a concierge care Dr. It would be worth every penny.
I agree! That’s the plan — someday!
I use a concierge doctor and while it costs $200/year to participate, I really like it. There is no wait, front desk is great, and you can get help over the app anytime of the day or night and get scripts without having to go for a visit.
GAH! I am so frustrated with the healthcare system in this country…. you really HAVE TO be your own best advocate (which for some people is really hard to do when they’re sick!) and it’s just so infuriating how you always have to be ‘on top of everything’. or it won’t work AT ALL.
I am so sorry you have to deal with this. The system is so broken. But this InsiderTracker thing? THAT sounds really really interesting.
I’m sorry about your experience with the healthcare system! Unfortunately it is all too common. I work in it so I see it everyday how frustrating it can be, but I don’t think there is a great answer. Have you looked into some alternatives to crohns? There are some things that we do that really seem to help patients, ALCAT testing (delayed allergy) and ozone might be something to look into 🙂
So sorry to hear about your struggles with the healthcare system. So frustrating! I hope things turn around for you soon. I won’t get into all the things I personally feel is wrong with healthcare today but just know I am totally on your side and often smh at how unjust it all seems. Keep up the good fight!
The blood testing you talk about sounds very interesting to me. I have been struggling with fatigue and wonder if something is out of wack in my blood. I am honestly interested in possibly having my own test done like you have. I checked out the website and it is a bit more expensive than I was hoping, and so before I sign up I was wondering if you could tell your devoted readers 🙂 what the savings would be. That into may help me decide which plan to choose. Thanks in advance.
Your post made me cry. This is exactly what I’ve gone up against with my myriad specialists for multiple chronic illnesses. Just today I spent two hours on the phone with insurance who suddenly didn’t want to cover my brain biopsy and sinus reconstruction (conveniently deconstructed because of a previous brain surgery). Sometimes you just need to vent. I really and truly hope that your Stelara gets to you in some sort of timely manner.
That is ridiculous. I would not stay calm in your situation. I hope you’re doing OK (a brain biopsy does not sound ideal) and I’m sending love and hugs your way! (If I could, I’d send better healthcare and understanding customer service representatives, but alas…)