One Secret Insurance Companies Do Not Want You To Know

April 17, 2025

By Taylor Coffman

The first image here is what fighting for your life with a rare disease looks like. This is the grunt-work of getting my medication approved.

ALWAYS APPEAL DENIALS. I don’t want to gate-keep it another moment! I want to shout it from the rooftops!

Because the big reality (or what the insurers don’t want you to know) is that 83.2% of medical insurance denials are overturned. 

However despite this high rate, only 18% of doctors always appeal. 

So if you find yourself facing a denial especially if it’s extremely necessary, urge your doctor and their staff to help advocate for the prescribed course of action. About half the time, they don’t appeal because the medical need is so great they can’t risk delays. But, the other half is because their team is swamped and they don’t have time to battle it out with the insurance company. 

This is where we as patients and caregivers can step in and do the work on our own to connect the dots and move the approval along efficiently.

We must project manage our own care, as I often say. 

Flashback to me, after over a month in the hospital, just home with my new baby and I’m on dialysis three days a week. I’m exhausted, riddled with pain, stress, and a fresh diagnosis I don’t want.  I’d lay in bed and stare at the fan on the ceiling desperate for relief from both the discomfort in my body and the helplessness in my situation.  And on top of all that, I need one infusion drug to survive and my insurance is repeatedly saying NOPE.

Here I am, wondering if I’ll survive to be with my baby for the next year… or five years… and my damn insurance company wants to risk my life to argue with my doctor over the drug that keeps my body from self-destruction. 

Those coldly cruel white envelopes in the mail with measured words saying this $300k medicine I’ve already had at least three doses of isn’t approved.

Despite the lead butterflies in my stomach, I had an ace in my pocket. My ace is an extremely passionate, brilliant, and kind hematologist who answers my texts and phone calls. I hope he doesn’t retire soon. (Actually he already retired once I think, so I’m already on borrowed time).  Along with a patient advocate who worked at the pharmaceutical company, he did the hustle to get the treatment approved. 

But this wasn’t the end of the process by a long shot. 

For about three years, I’ve gotten this infusion every 8 weeks, and you’d be shocked that despite my insurer approving it previously and knowing I need it to live because I have a disease without a cure – I still regularly get denials. And so prior authorization denials have just become a part of the process for me. 

It’s been like clockwork for the past six months, denials or new random prior authorizations for the same drug over and over. I text my doctor and he rallies to get the approval to go through. And I spend a ton of leg-work to make sure it gets sent to me in time for my infusion.  Because, there’s a time-clock ticking. When the 8 weeks is over, my body is at risk of trying to murder me if the right trigger lurks like an infection or some other kind of bodily stress event.

Every day I’m walking around after the 8 weeks without the med, is a gamble for possible kidney failure. 

I loathe the prior authorization system with the deepest of hate-rage. I call it the Devil’s Red Tape. It’s blatantly dangerous, excessively expensive and unnecessary. It’s an operational bottleneck that doesn’t need to be there.  The Biden and Trump administrations have both tried to add policies to help the process. A bill for a new prior authorization system for Medicare Advantage was co-sponsored by both parties. But high-risk patients like me who buy into insurance on the marketplace are still left exposed and vulnerable.  Luckily my state of CA has some protections at the state government level, according to my hematologist. By result, pretty much everything is eventually approved, he says. So, I guess I can’t move. 

And denials are increasing thanks to AI. “Three-quarters of physicians (75%) reported the number of prior authorization denials has increased somewhat or significantly over the last five years,” according to the American Medical Association.

AI has its place, but this is the opposite of the reforms we need. More denials mean more delay, harm, poor outcomes, expense, burden, and burnout.  And for what? Especially when over 80% are overturned? In a medical system already challenged, I think prior authorizations need to be kicked down to the bottom of a well.

So, what can we do in the meantime?

Be a very polite, charming, insistent squeaky wheel. Always call. Always ask questions. Get names. Don’t go away.

Inquire as to why it was denied. They are required to be more transparent now. Ask what codes were used – sometimes there is a coding issue. 

Often they deny it because they want more information from the doctor to approve it.  They are hoping you just go away. But know with over 80% appeal approval rate, odds are on your side. We have more power than they want us to know. 

To read more from Taylor, please visit: https://taylorcoffman.substack.com/