Let me count the ways that the healthcare system is broken

Alternative title to this blog post:
Choosing our battles.

I am furious: shaking with anger and frustration. Because after 13.5+ years of living with diabetes, the number one frustration continues to be fighting for access to supplies and the tools I need to treat my diabetes.

The latest scenario is this (skip to the end if you don’t want to read the emotional, nitty gritty detail part and want a tl;dr):

I changed jobs last year, and thus I had new insurance. New insurance = new authorization for all the things diabetes wise. For those of you unfamiliar, this is a long list: pump; pump supplies (reservoirs and sites); insulin; CGM receiver; CGM transmitter; CGM sensors, test strips, etc.

The biggest battle this time was for getting approval for my CGM, which I’ve been using for years. But I had to re-prove that the autoimmune disease that I have has not in fact gone away. So I did. But my CGM authorization request was denied, because my blood sugars were “too good”.

Sigh. (So maybe that’s the one “downside” to an artificial pancreas?)

I fought the denial with an appeal. Finally, after many phone calls and hoop jumping, they overturned the decision and granted approval. My CGM receiver, transmitter, and 3 months of sensors were shipped on March 15. Hooray! I figured my problems were solved until I switched insurances again in the future.

But wait, there’s more.

I waited very carefully until the end of June, past the three month mark of when I had got my first batch of sensors, to put in the order for the next 3 months worth of CGM sensors. I placed my order, went on a trip, got back to Seattle, and assumed they were floating their way to me.


I received a phone call today informing me that the supply company was working on the authorization for my CGM sensors..but couldn’t submit it because my doctor’s chart notes were older than 6 months. My response was, “why do you need an authorization? I had one three months ago.”

Turns out, the insurance only authorized me for CGM sensors until April 30. The order shipped as soon as authorization was received was dated March 15, so they knew there was no way I could submit another order for them before June 15.

Anyone else see the problem here? They knew I would have to go through this process AGAIN. It’s not like my non-curable type 1 diabetes was going to go away in the three months, thus my need for CGMs to help me manage said diabetes did not go away, either.

And because my endo appointment is scheduled for July 28, the supply company is unable to put in the order until I go to the appointment and get new chart notes (they have to be <6 months old). So I have to call the endo again and get a soon-as-possible appointment to pay my $15 co-pay to get new chart notes to get a new batch of sensors.

I. Am. So. Frustrated.

The healthcare system is so, so broken. Patients shouldn’t be running in circles, unnecessarily going to the doctor’s office and taking up their time that could be spent helping people who need that face to face time. It’s unnecessary time for the doctor, time I have to take away from work/life, and lots of paperwork and phone calls, and it’s been this way for over a decade.
I am very fortunate, because I’m currently fighting this battle for CGM, not for test strips or insulin. (Although, I’ve done that before, too.) There are people who can’t afford CGM even if they get coverage, and people who are fighting for coverage or are in parts of the world and can’t access insulin. I very much get that and am hyper-aware of my privilege here.

But that’s why I have to choose my battles. My heat of the moment reaction is to want to rattle up the poles of my insurance company and fight to make this not the reality; but the reality is, it’s not just my insurance company. It’s every insurance company. It’s the entire healthcare system right now that’s wrong and in need of balance and fixing. And so Scott and I are trying to choose our battles – and utilize the privilege we have and the resources we have – to make the biggest difference in changing the healthcare system.

So that is what we are doing, with numerous projects related to OpenAPS and the broader #WeAreNotWaiting movement: working with the FDA and other organizations and individuals who want to help make the future of healthcare better.

But in the meantime, I’m also calling my endo to change my appointment and fighting the battle for personally getting my CGM approved and probably paying 100% out of pocket for a box or two of sensors to tide me over.

7 thoughts on “Let me count the ways that the healthcare system is broken

  1. Here Here…

    Sorry to hear this. I was diagnosed back in 2001 (terrible year) but went without insurance often for the next five years, working dumb contract jobs that never paid much. Never had control of my BG until very recently (months) with pump+CGM, and just heard my kidney’s might finally be failing. Going to know more on Tuesday.

    This system is a terribly inefficient and grueling process for everyone. I won’t even start on how many bills, phone calls, time, and just waste of life some of these companies suck out of you. I just don’t know about our priorities sometimes.

    I’ve been following the OpenAPS work and am really amazed with everyone. Your doing decent work that other people will benefit from.

    1. Thanks for the comment and kind words…and ugh! So sorry to hear, fingers crossed for positive news and if not, strength and good support from your doc on next steps if otherwise.

  2. This constant battle contributes an unquantifiable amount of psychological stress to an already very stressful life of the T1. I fought these battles constantly for my daughter, Brooke Pazoles, since she was dx’d at age 7. One of the many heartbreaks of this disease was having her call me as a young adult, in tears after dealing with insurance, saying, isn’t having diabetes bad enough? It’s soul-crushing.

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