I write about our absurd healthcare system. Then I got caught in it.

I received a rushed voicemail from my pharmacist in Wisconsin the day before Thanksgiving letting me know that my insurance refused to cover my insulin.

I’ve had enough of the hormone that keeps me alive for 17 days.

In my 10 years of living with type 1 diabetes, I’ve never really had trouble accessing insulin. But in my work reporting on those left behind by our country’s absurdly complex healthcare system, I’ve written about how the high cost of insulin leads to deadly rationing and about patients protesting for lower those prices.

For the most part, however, I’ve been spared the issues I cover. Maybe that’s why I waited over a week to call my new pharmacy in St. Louis, where I recently moved for this job at KHN.

I had been waiting since September for an appointment with an endocrinologist in Saint-Louis; the doctor’s office couldn’t get me in until December 23rd and didn’t take care of my prescriptions until then. When I finally called a pharmacy to sort this out, a St. Louis pharmacist told me that my new employer-provided insurance wouldn’t cover insulin without what’s called prior authorization. I also wrote about them. These are essentially requirements that a doctor must obtain approval from an insurance company before prescribing treatment.

Doctors hate them. The American Medical Association has a website outlining proposed changes to the practice, while the insurance industry defends it as protecting patient safety and saving money. It feels like a lot of paperwork to confirm something we already know: Without insulin, I will die.

I knew right away that pre-authorization would be a problem. Since it was a Saturday when I learned of the need for the clearance, my best bet was to call my old endocrinologist’s office that Monday morning and beg their employees to fill out forms for their now former patient.

I had enough insulin to last seven days.

But late afternoon, I received an automated message from the pharmacy regarding an insurance issue.

After spending 45 minutes on hold the next morning, I finally managed to reach the pharmacist, who told me that my insurer was still waiting for a completed pre-authorization form from my doctor. I called the doctor’s office to help out.

There are four days of insulin left.

My prescription price without insurance was $339 per vial of insulin, and I use about two vials a month. Normally I pay a copayment of $25. Without prior approval, however, I am exposed to the list price of insulin, just like anyone with diabetes who does not have insurance, even if they live in one of the states with quota caps. -part intended to limit costs.

I called the pharmacy back Thursday at 7:30 p.m., thinking there would be fewer people. I immediately managed to reach the pharmacist who told me that my insurer was still waiting for the prior authorization form. On Friday morning, the diabetes nurse at my doctor’s office told me she would check it out and call me back.

I would be out of insulin the next day.

At that time I was live-tweet my attempt to refill my prescription and I started getting the kind of messages that are familiar to everyone in what is called the “online diabetes community”. Some people from Missouri offered me their extra insulin. Some have suggested I go to Walmart for $25 insulin, an older type that I don’t know how to use safely.

My new strategy was to use one of the programs that insulin manufacturers have recently launched to help people get insulin for less. On the same day, the U.S. House Committee on Oversight and Reform Democrats released a report calling these types of assistance programs “tools for achieving positive public relations, increasing sales, and increasing income”.

But before trying this option, I heard from the nurse who had called the pharmacy (she had been on hold for 25 minutes) and learned that my new insurance would not cover the brand of insulin that I was using. The pharmacist was checking another brand.

Soon the pharmacist called: My insurance would cover the other brand. But the pharmacy might not have enough to fill my order. She said I should call another branch of the chain. The first place I called was also out but directed me to another that had it.

With 12 hours of insulin remaining, I walked out of that third store with my meds in hand.

It took 17 days and 20 phone calls. But I know I’m lucky. My insurance is truly exceptional, recent events aside. My boss insisted that being alive was part of my job because I spent hours on the phone during the work day. And my job is to be persistent as I navigate the maze of healthcare in the United States.

The time wasted by me, pharmacists, nurses and probably some insurance officials is staggering and probably both a cause and a symptom of the high cost of medical care. The problem is also much bigger than that.

Insulin is the most important resource in my life, and that’s what I had to do to get it. But I know that not everyone has my luck. I interviewed the relatives of people with type 1 diabetes who couldn’t get insulin, and it’s not hard to imagine how my story could have ended so tragically.

On December 23, I finally saw my new doctor, who sent me a new prescription. That night I received a message that my insurer was waiting for pre-authorization.

I had 17 days of insulin left.

Bram Sable-Smith is a reporter for Kaiser Health News. Previously, he was the WPR Mike Simonson Memorial Investigative Reporting Fellow embedded in the Wisconsin Watch newsroom from October 2019 to last July, based in Madison.

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