My Recent Experience Navigating the U.S. Healthcare System

There are so many issues with our healthcare system in the U.S. that I could write a book. In fact, I’m sure there are countless books written on the subject. From for-profit insurance companies calling the shots based on what they are willing to pay for, to the lack of government oversight in implementing price controls for prescriptions and procedures, to health insurance being tied to employment, to systematic racism and gender bias affecting care--all in all, the system is severely flawed.

But the fact is that 6 in 10 American adults live with a chronic disease (4 in 10 live with more than one).¹ That’s more than 190 million Americans! So, unless you’re willing to manage your chronic condition without a healthcare provider (as many have to do who cannot afford the high costs of healthcare in the U.S., with or without insurance), you have to forge ahead into the fray.

My recent healthcare disruption

Since health insurance is strangely tied to employment in the U.S., changing jobs often means changing insurance, and may also mean finding a whole slew of new doctors. That was the case for me when I recently accepted a job in another state. As excited as I was for the move and to start a new job, I absolutely dreaded the challenges I was up against to re-establish care.

And my dread was warranted. I started my new job at the beginning of November 2020, and my new health insurance began on the first day of employment. Though I technically had coverage on the first day, I had to wait nearly an entire month to choose my plan, receive my coverage information, and begin the search for physicians.

I wasn’t in too much of a rush. I had just visited my rheumatologist in October, just received three month's worth of my biologic medication, and just completed a panel of blood work. But three month’s isn’t a whole lot of time to find new doctors, get referrals, push prior authorizations through the insurance company, etc. And for some odd reason, I had to deal with a month-long delay on the part of my new employer before I could even begin searching for doctors.

Physicians, pharmacies, and prescriptions

I finally got in to see a primary care physician in January of 2021. Two months had passed and now the clock was ticking until I ran out of my biologic. There was no way I was going to get in to see a rheumatologist before my prescription ran out, so I asked my primary care doctor if he could fill the prescription in the meantime. His answer: he’d prefer that the specialist managed my medications.

Don’t get me wrong--I know he’s not the physician responsible for managing my axial spondyloarthritis and therefore not in charge of prescribing those medications. But his quick dismissal struck me as a lack of compassion, especially as I sat there, stressed, wondering how long I’d have to go without. Ultimately, he was sending a clear signal that he’d rather I go without my biologic, which would result in a significant onset of fatigue, inflammation, and pain, because he couldn’t be bothered.

Luckily, I was able to get my previous rheumatologist to submit the prescription and prior authorization to the new specialty pharmacy preferred by the new insurance company, and my biologic arrived only four days late. It only took nine phone calls and a message through the patient portal to accomplish this (and the message is still unread today).

As I type, I’m still waiting for a call back from the new rheumatology clinic to schedule my appointment. Fingers crossed that I get in before summer.

Lessons learned

This wasn’t my first rodeo, as they say. I have moved across state lines and changed jobs before. Yet every time I go through this complicated process of navigating the healthcare system, I learn something new. Here’s what I learned this time around:

1. Not all primary care physicians are willing to help you bridge the gap on your specialty medications. Though my last primary care doctor was willing to write the prescription while I waited for my rheumatology appointment, that may have been the exception and not the rule.
2. Some specialty medication manufacturers have bridge programs to assist patients in getting medication while they navigate the delays inherent in changing insurance companies and providers.
3. Call and call again. Though I may be that typical millennial that dread’s phone calls, therefore finding every reason to procrastinate them, frequent phone calls are the way to get the ball rolling in the healthcare system. Doctor’s offices, insurance companies, and pharmacies do not always call you back when they say they’re going to, so it’s up to you to be persistent.

Above all else, it’s important to remember that you are your best advocate. I’m constantly reminded of this. No one is more concerned about my health than I am, therefore no one is going to advocate for my care as strongly as I will.