How a white woman’s experience with her insurance company opened her eyes to healthcare inequities for BIPOC.

It is January 2019, and I am standing on a Philadelphia street outside a Starbucks. Tears of bitter defeat fall down my face into my cell phone. On the other end is a representative from my health insurance company who has just informed me that I cannot get the MRI that is scheduled 15 minutes from now because it’s at an unapproved Tier 3 facility; instead, I’ll have to get an appointment at the approved Tier 1 facility which is about 15 miles away and does not have an opening for another five days.

I should mention that a week before this phone call, I had a freak accident that resulted in a full, high-grade tear of my left ACL. By the time this call happens, I can barely walk, and any movement at all is accompanied by severe pain. I also have only a vague notion of what tiers are, and certainly very little understanding as to why they would prevent me from getting out of pain and back to moving more quickly.

Over the next year as I navigate diagnosis, surgery, and physical therapy; as I purchase knee braces, crutches, and cryo-therapy machines, I will learn a lot about tiers and more. I will come to find that my health insurance plan is structured to make the process difficult, expensive, and confusing.

In fact, there will be many times that I speculate my insurance company would prefer if I simply didn’t pursue treatment at all.

I come to believe this because of how downright byzantine practically every moment of my treatment and recovery proves to be. I grapple with concepts like “capitated” to understand why, based on the location of my primary care physician, there is only one place I am authorized to go for physical therapy — regardless of the fact that my surgeon doesn’t recommend it, and that it is nowhere near where I live. I ultimately change my primary care physician, moving from the lovely, family medicine doctor with whom I’ve developed a close relationship over 10 years, but who doesn’t have an office location near my apartment, to a new practice that I literally pick based on their coming up first in a “providers near your zip code” list during one of my lowest moments in the entire year long ordeal. Not exactly an ideal time to decide who will be doing your annual pap smear from now on.

I also come to believe a few things that are much sadder and perhaps almost sinister as I navigate endless phone calls, benefits claim documents, website searches and office visits. Ultimately, the objectively inhumane and unfair treatment I receive at the hands of my insurer opens my eyes to some things that once seen, can never after be unknown:

1. Our insurance system dis-incentivizes entrepreneurship and free agency. A crux of this story is that my ACL tear occurred a year after I started my own business and for the first time in my entire life did not have employer-sponsored insurance. The plan I was paying for through the health exchange cost me about $300 more a month than I had ever paid before — and yet it offered pitiful benefits with through-the-roof copays ($350 for the above MRI, $700 for the leg brace) and sky-high deductibles. The costs associated with my ACL injury very nearly made it impossible for me to continue running a business that at that point in time wasn’t providing me a regular paycheck. You could say I willingly chose the plan and banked on my previous 48 year run of perfect health in selecting it — but no matter how detail oriented you are, I promise you can’t accurately predict what you’ll end up paying on one of these Tiered plans. Quite frankly, the insurance companies don’t want you to.
2. Our insurance system favors the highly-educated, white, English as a first language speaker. After my feelings of loss and injustice on the day I had to make more than six phone calls to change my primary care physician, the very next thought that came beaming into my mind was that if not for my cognitive and communication abilities (both of which are high) there is no way I could have successfully jumped through all those hoops. Again and again, I realized that the pain of my experience — happening for the first time in my life, don’t forget — was likely nothing compared to the pain, fear, and humiliation millions of people who don’t share my privileges have to suffer through their entire lives when dealing with our healthcare system. For me as a college educated white woman with access to family wealth, my ACL was a devastating experience that I could marshal my advantages and resources to overcome. I’m both deeply saddened, yet unfortunately not surprised, that a system designed by and for white people lacks compassion and connection to human dignity outside the white, educated, English speaking demographic.
3. Our insurance system favors those with access to a digital ecosystem. While it may be tempting to believe that in 2021 everyone has a 4G enabled smartphone and two or three other devices like laptops and tablets for Internet access at home, that’s simply not true. There are entire counties in the United States that still don’t have broadband. For some complex tasks during my treatment, I had my cell phone and two browser windows going at the same time. I must have used every search function the insurance company portal had and often found myself screenshotting, emailing, and in other ways sharing information with others in my care ecosystem. All manually, all digitally, and all requiring devices and high-speed access that were available to me 24/7.

It is now 2.5 years since my ACL tear and surgery and I am fully recovered physically. Mentally and emotionally though, I will never be the same. The experience opened my eyes to injustice and unfairness that had been invisible to me. It revealed a health care system that is more focused on financial outcomes than it is on human outcomes and showed me how much privilege many aspects of my identity provide to me in a crisis. It terrified me with the reality that if even one of those aspects were taken away — if I were a Black woman, for example — I might have never recovered physically or financially from my accident. The cards would simply have been stacked too heavily against me.

There was one silver lining in my ACL experience, and that was the providers — all of them, wherever I went — were incredibly sympathetic to my experience. They, too, find the insurance companies to be unnecessarily complicated and they hate having to tell a patient they can’t get the care they need, because somewhere in an airless conference room, a decision was made in seemingly complete absence of real people and their care.

One provider stands out as a shining example of all that our healthcare system should aspire to, and that was my surgeon. He’s a very well-known orthopedic whiz, team doctor for a couple of local professional sports teams, and thought of as “the only guy to go for your knee” in a city with lots of highly credentialed doctors.

I’d been so excited to get an appointment with him and to begin to plan my surgery and recovery. But then I went home and logged into the insurance portal, and saw that none of the three facilities where he performed his surgeries were approved. The insurance company recommended I find a different surgeon.

When I called the doctor to tell him, resigned and heavy hearted, I also told him through my tears how scared I was of never experiencing the joy of running again, something I’d been doing since I was 15 years old.

His response was a shocking moment of lightness and faith in my ACL story. He said, “I will perform your surgery.”

Together with his assistant we figured out which facility where he had operating privileges would be approved by my insurer. He traded hours with a surgeon friend at that facility, which was about 40 miles from his office. He got there at 5:00 in the morning — before his regular operating hours at his usual locations — to prep for my procedure.

This surgeon — this Black surgeon — acted from a place of pure humanity and his desire to provide his patient the care and comfort that each and every one of us deserves, but far too many of us never receive.

This Black surgeon who, despite his education and wealth, has likely experienced mis-treatment of his own within our healthcare system, could empathize with my terror and sadness with ease. He instantly chose to give to me what so many others don’t get: the confidence that I was in good hands, that my surgery would be successful, and that everything would be okay.

Being in Doctor Dodson’s care is what I always thought healthcare was supposed to be: exceptionally supportive, and focused on helping patients stay in or return to health, rather than some perverse game of complex tiers and spreadsheets. It’s about a whole human being feeling that every part of their body, mind and spirit is valued, and therefore able to operate at their fullest capacity.

Until every single one of us has that type of health in this country, I am now sure that none of us really do.