I got a hurried voicemail from my pharmacist in Wisconsin the day before Thanksgiving letting me know my insurance was refusing to cover my insulin.
I had enough of the hormone that keeps me alive to last 17 days.
In my 10 years living with Type 1 diabetes, I鈥檝e never really struggled to access insulin. But in my job reporting on the people left behind by our country鈥檚 absurdly complex health care system, I鈥檝e written about how insulin鈥檚 steep cost leads to deadly rationing and about patients protesting to bring those prices down.
For the most part, though, I鈥檝e been spared from the problems I cover. Maybe that鈥檚 why I waited over a week to call my new pharmacy in St. Louis, where I recently moved for this job with KHN.
I鈥檇 been waiting since September for an appointment with an endocrinologist in St. Louis; the doctor鈥檚 office couldn鈥檛 get me in until Dec. 23 and wouldn鈥檛 handle my prescriptions before then. When I finally called a pharmacy to sort this out, a pharmacist in St. Louis said my new employer-provided insurance wouldn鈥檛 cover insulin without something called a prior authorization. I鈥檝e written about these, too. They鈥檙e essentially requirements that a physician get approval from an insurance company before prescribing a treatment.
Doctors hate them. The American Medical Association has a 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 the prior authorization would be a problem. Since it was a Saturday when I learned about the need for the authorization, my best option was to call my old endocrinologist鈥檚 practice that Monday morning and beg his staffers to fill out forms for their now former patient.
I had enough insulin to last seven days.
But late that afternoon, I got an automated message from the pharmacy about an insurance issue.
After spending 45 minutes on hold the next morning, I finally got through to the pharmacist, who said my insurer was still waiting for a completed prior authorization form from my physician. I called the doctor鈥檚 office to give a nudge.
Four days鈥� worth of insulin left.
The price of my prescription without insurance was $339 per vial of insulin, and I use about two vials per month. Normally, I pay a $25 copay. Without the prior authorization, though, I鈥檓 exposed to the list price of insulin, as is anyone with diabetes who lacks insurance, even if they live in with copay caps intended to rein in costs.
I called the pharmacy again on Thursday at 7:30 p.m., figuring it鈥檇 be less busy. I got right through to the pharmacist, who told me my insurer was still waiting on the prior authorization form. Friday morning, the diabetes nurse at my doctor鈥檚 office said she鈥檇 check on it and call me back.
I鈥檇 be out of insulin the next day.
By this time, I was my attempt to refill my prescription and started to get the kind of messages that are familiar to anyone in what鈥檚 known as the 鈥渄iabetes online community.鈥� People in Missouri offered me their surplus insulin. Some suggested I go to Walmart for $25 insulin, an older type I have no idea how to safely use.
My new strategy was to use one of the recently to help people get cheaper insulin. The very same day, the U.S. House Committee on Oversight and Reform鈥檚 Democrats released a deriding these types of assistance programs as 鈥渢ools to garner positive public relations, increase sales, and raise revenue.鈥�
But before I tried that option, I heard back from the nurse who had called the pharmacy (she had spent 25 minutes on hold) and learned that my new insurance wouldn鈥檛 cover the brand of insulin I was using. The pharmacist was checking on a different 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 a different branch of the chain. The first location I called was also out but pointed me to another one that had it.
With 12 hours鈥� worth of insulin left, I walked out of that third store with my medicine in hand.
It took 17 days and 20 phone calls. But I know I鈥檓 lucky. My insurance really is exceptional, recent events aside. My boss insisted that being alive was part of my job as I spent hours on the phone during the workday. And my job is to be persistent as I puzzle through the labyrinth of U.S. health care.
The time wasted by me, the pharmacists, the nurses and probably some insurance functionaries is astounding and likely both a cause and a symptom of the high cost of medical care. The problem is also much bigger than that.
Insulin is the single most important resource in my life, and this is what I had to do to get it. But I know not everyone has my good fortune. I鈥檝e interviewed the loved ones of people with Type 1 diabetes who could not get insulin, and it鈥檚 not hard to imagine how my story could have ended just as tragically.
On Dec. 23, I finally saw my new doctor, who sent in a new prescription. That night, I got a message that my insurer was waiting on a prior authorization.
I had 17 days鈥� worth of insulin left.