The Hidden Job of Living With Type 1 Diabetes

How I Spent Over 5 Hours Navigating Insurance, Pharmacies, and Prior Authorizations Just to Access My Medications That Keep Me Alive

Quick Summary

Living with Type 1 diabetes requires constant attention to blood sugar management, insulin dosing, and lifestyle decisions. What many people don’t see is the administrative burden happening behind the scenes; the hours spent coordinating between insurance companies, pharmacies, and doctors just to access life-sustaining medications.

In this post, I’m sharing a real experience navigating prior authorizations, pharmacy transfers, insurance formularies, and medication shortages involving diabetes technology like the Dexcom G7 and Omnipod DASH.

My hope is that sharing this story brings awareness to the hidden work people living with Type 1 diabetes face every day, work that often goes unseen.

When Managing Type 1 Diabetes Becomes an Administrative Job

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When people think about living with Type 1 diabetes, they usually picture the daily health decisions:

But there is another side of Type 1 diabetes that rarely gets discussed.

The hours spent navigating healthcare systems.

Last week I spent more than five hours coordinating between my insurance company, my doctor’s office, and my pharmacy just to access medications and supplies that literally keep me alive.

And the frustrating part?

I had tried to do everything proactively.

It Started With a Call to My Insurance Company

I just enrolled in a new insurance plan as soon as I was eligible. This always causes a little anxiety because I know I can’t ask detailed questions about my medications, prior authorizations, or pharmacy coverage until the policy actually becomes active. I admit, I also often have worries about dwindling supplies because I know getting everything sorted out always takes more time than anyone can plan ahead for. I felt more prepared this time, at least as prepared as I could be and waited for the first day when I would be able call in to my new insurance company. So, at the beginning of last week, my new policy began and I did the responsible thing and called to speak with a customer service agent.
After several prompts, entering my insurance number, birthdate, and security questions, I finally reached a representative…

She politely asked me to repeat all of the same information again. And just as I finished…

the call dropped.

So I took a breath and started again.

More prompts.

More verification questions.

Eventually I reached a representative who placed me on hold while she researched which medications required authorization for someone living with Type 1 diabetes.

When she returned, she told me that only two items required prior authorization:

• Dexcom G7
• Omnipod DASH

That seemed straightforward.

But the call continued.

She walked me through the website for my pharmacy benefit website, so I could compare medication pricing at different pharmacies, review the insurance policy’s approved medications and supplies.

Even Comparing Pharmacies Was Complicated

While reviewing my pharmacy benefit website, we discovered that not all supplies followed the same rules.

Some prescriptions could be filled as 90-day supplies.

Others could not, and that seemed to be dictated by my insurance company, not necessarily
what my doctor thought.

For example:

Omnipod supplies allowed a 90-day fill
Dexcom sensors did not. This is a big issue for me because a 30-day supply is only three sensors, and I travel frequently for work. It’s really important that I have more than just two sensors on hand because their failure rate is somewhat frequent. Having working sensors is critical. Without them, I lose the alarms that wake me up if my blood sugar drops dangerously low overnight.

When, I explained to the representative how critical it is to have a 90 day supply this led to
more time on hold.

When she returned she helped navigate through several steps on their website where we finally arrived on a Quantity Exception Form that I could download and send  to my doctor so they could fill out and request extended supplies. It felt strange that there was so much red tape to get a 90-day supply when that’s what I’ve always had and what many people living with Type 1 diabetes rely on.

Next we navigated through several steps and arrived on another section of the website where we finally found an Urgent Prior Authorization Request form. This was needed to expedite the typical two week process into 72 hours since my remaining insulin pump supplies would not last that long.

By the time that call ended, nearly an hour had passed and I have to admit I was already feeling frustrated. But, I remained calm and courteous with the rep because I knew she was truly trying to help and just doing her job.

Trying to Be Proactive Cost Me Hours of My Workday

After the call, I immediately began taking action.

I registered for an account with my pharmacy benefits website.

I compared pharmacies.

I chose 2 new pharmacies. One local pharmacy for my medications and the other through a mail order pharmacy for my insulin pump and continuous glucose monitor supplies. Why two different pharmacies? Because this was my most cost-effective option.

I then logged into my doctor’s portal, sent detailed instructions, attached the documents, and explaining what needed to happen.

Then I called the office to confirm someone saw the message and listed off what needed to happen:

You may wonder why I called after already sending in the messages online. It’s because in all of my almost 17 years living with type 1, messages have often sat in doctor portals with no action unless there is a follow up call to be sure. I’d already made sure to correct the list of my prescriptions at my doctor’s visit earlier that week to make sure their records were accurate. Next, I explained that I would need to refill my Omnipod supplies by the end of the week and my insulin refills would be needed soon after, and preferrably before my next work trip.

One silver lining is that my doctor just happened to have some extra Omnipod samples they were happy to set aside for me to pick up and that immediately alleviated some of my anxiety.

By the time I finished those tasks, I had already lost two hours of my workday.

Which meant I had to make up those lost hours later that evening.

And that was just one day.

Waiting… and Then Following Up Again

After sending instructions and speaking with my doctor’s office, I waited a couple of days expecting updates.

None came.

So I sent another message through the patient portal.

Still nothing after several hours.

Eventually I called again to ask for a status update.

That’s when the back-and-forth started.

The next day the pharmacy told me:

“We received some prescription transfers, but we’re still waiting on information from your doctor.”

But when I called my doctor’s office, they said:

“We already sent everything.”

Back and forth.

Again and again.

As More Prescriptions Finally Appeared… New Problems Emerged

The remaining prescriptions began appearing in the pharmacy system.

But new issues immediately surfaced.

My doctor’ office sent the wrong dosage of Levothyroxine.

My emergency glucagon prescription was missing entirely.

Multiple times the pharmacist told me they were still waiting for information from my doctor.

Meanwhile my doctor’s office insisted everything had already been sent.

The Pharmacy Visit

When I finally arrived at the pharmacy, the complications continued.

My rapid-acting insulin, Humalog, was out of stock.

I asked if the pharmacist could substitute the generic equivalent.

The system rejected the request.

My insurance only approved the brand name version.

Switching to the generic required an entirely new authorization.

The long acting insulin prescription showed it now needed a preauthorization.

And for some unknown reason, I was told that my doctor cancelled the prescription for my new blood sugar meter….sigh….

More waiting….

More troubleshooting….

More system confusion….

At that point I had already spent hours navigating phone calls and paperwork.

I’m not someone who complains easily.

I’m not even close to a “Karen.”

But situations like this could bring almost anyone living with, or caring for someone with, Type 1 diabetes to tears.

Not because of one interaction.

But because of how many barriers must be navigated simply to access routine medications.

Then Came the Billing Confusion

While trying to resolve the meter issue, the pharmacy filled my test strips.

The cost for a small box of 100 strips?

$122

I was not at all happy about that, but I figured it was due to the requirement to pay full retail price before meeting my deductible. Why full retail price for a tiny box of test strips is over $100, I’ll never know, but I was exhausted. So I paid it and went home.

Later, after reviewing my receipts, I discovered it really should have just been a $10 copay. So, back to the pharmacy I went to sort out a refund…

The Real Problem Wasn’t the People

Every person I interacted with that week, pharmacists, technicians, doctor’s office staff, and insurance representatives, were kind and genuinely trying to help.

The problem wasn’t the people.

The problem is the system.

Three different systems were involved:

And yes, there may have been a little human error along the way. That’s understandable. But, the heart of the matter is that none of the systems work together effectively.

So the patient becomes the coordinator and bears the brunt of all the issues.

The Hidden Administrative Burden of Type 1 Diabetes

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Living with Type 1 diabetes already requires constant attention to health.

But behind the scenes, there’s another job many people don’t see:

It’s a hidden administrative workload that many people with chronic conditions carry quietly.

A Quick Note About Why I’m Sharing This

Before finishing this story, I want to be very clear about something.

I’m not sharing this experience to shame my doctor’s office, the pharmacy, or my insurance company. Every person I spoke with during this process was kind and genuinely trying to help.

I also recognize that there are likely many things happening behind the scenes that patients don’t see.

My messages to my doctor’s office may not have been ignored at all. They may have been researching answers internally before responding, working through other urgent patient needs, or navigating their own administrative systems. Healthcare teams today are often overwhelmed, and I have a lot of respect for the work they do.

The same is likely true for the insurance company and the pharmacy. There may be policies, procedures, and systems in place that create friction in the patient experience, even when the people involved are doing their best.

As patients, we rarely see those unseen factors.

What I do know is that the overall experience often feels broken from the patient side. Unless we start talking about it openly and raising awareness, meaningful change becomes very difficult.

Systems can’t improve if the people responsible for them never hear how those systems are experienced in real life.

My hope in sharing this story is simply to shine a light on that experience.

I’m not sharing this for personal attention or sympathy. I’m sharing it because the system itself creates barriers that make accessing essential medications far more difficult than it should be.

Accessing insulin and diabetes supplies should never be harder than managing the disease itself.

People living with Type 1 diabetes deserve better.

Unfortunately, this experience isn’t unique to me.

Have You Experienced Something Like This?

If you live with Type 1 diabetes, have you ever experienced something similar when trying to access insulin, diabetes technology, or supplies?

I would love to hear your story.

Because the more we talk about the hidden administrative burden of living with Type 1 diabetes, the more awareness we bring to the systems that need to change.