One Man’s Odyssey: The Maddening Quest for a Libre

By James S. Hirsch

Acclaimed author James S. Hirsch on his encounter with a broken healthcare system while trying to obtain FreeStyle Libre for his teenage son

In diabetes, insurance horror stories are common, and as someone who’s had type 1 for 41 years and who also has a son with type 1, I thought I had seen it all. But never underestimate our health care system’s ability to find new ways to disappoint.

I recently tried getting coverage for Abbott’s new Freestyle Libre continuous glucose monitor, and the request turned into an experience so bizarre that I thought it came right out of Joseph Heller’s upside-down world in Catch-22.

First, a word about health insurance. It’s an odd business. In most businesses, you receive the product when you pay for it. But with insurance, you pay for the product before you use it, which gives insurers two ways of making money: They can deny claims (withhold the product), or they can try to keep you healthy so they don’t incur heavy losses through hospitalizations, major illnesses, or other catastrophic events.

Insurers are not supposed to deny claims randomly, and most don’t. They deny coverage for a product if it has not demonstrated efficacy, or if it’s more expensive than a similar product that serves the same purpose.

The enlightened insurers know that the best way to make money in diabetes is to invest in keeping those patients healthy, because the cost of daily care is a pittance compared to the cost of even one visit to the emergency room, let alone the exorbitant fees associated with long-term complications such as kidney dialysis, heart disease, or retinopathy. Beyond money, the enlightened insurers will move heaven and earth to keep their diabetic patients healthy because, well, let me count the ways:

• Health is better than sickness.

• Happiness is better than despair.

• Life is better than death.

Which brings me to the Freestyle Libre, which was approved in the United States last year. (Check out diaTribe's review here.)

My son, Garrett, is 16 years old, and over the years, he’s tried using the Dexcom CGM. But Garrett plays football, basketball, and baseball; he lifts weights; he swims; he sweats; and the Dexcom doesn’t stay on his body. (We have two Dexcom transmitters nestled safely at the bottom of a lake in New Hampshire.)

The Libre is more feasible for Garrett because its sensor is about the size of a quarter and attaches to the arm. When Garrett traveled abroad last summer, we got the European version of the Libre through a friend. Garrett used it for five weeks, and the sensor – which was replaced every 14 days (the European version) – stayed on his body and kept him safe. The Libre’s smaller profile is also attractive to teenagers who don’t necessarily want to walk around with devices attached to their body.

Make no mistake. Garrett doesn’t love the Libre or anything else that makes his diabetes visible, but he recognizes the value in CGM, and he was ready to use the Libre full-time once the FDA approved it. The timing was particularly good, as Garrett started driving last year, and driving while hypoglycemic is a mortal threat in diabetes.

In December, Garrett’s doctor submitted the Libre paperwork to our insurer, Tufts Health Plan. I assumed that Abbott had met with the payers and demonstrated the efficacy of the product. The Libre is also cheaper than Dexcom. Most payers now understand the benefits of CGM and are covering it, at least for type 1 patients. I know that Tufts is, because it covers my Dexcom, and I wasn’t expecting any issues with the Libre.

After a couple weeks, I called Tufts about coverage for Garrett’s Libre, and a customer service representative told me that the insurer had indeed approved the request.

Great! When can he start?

Well, she said, it’s not that simple. The Libre falls under the category of Durable Medical Equipment, and Tufts has contracts with a number of DME suppliers who must then distribute that product to the customer. The rep said that she would email me a “provider directory” that listed the DME suppliers in my network, and I could call them to see who delivered the Libre.

I thought it strange that my health insurer wanted me to do the legwork, as if I was searching for a home appliance, but okay, whatever it takes. The rep emailed me the directory, and I found the Durable Medical Equipment suppliers near those for “Breast Pumps” and “Nebulizers.” I called each of the 10 DME distributors.

Not one of them distributed the Libre. In fact, most of them told me they were out of diabetes entirely.

Desperate, I was tempted to call a Nebulizer on the off chance that a CGM device had snuck in with the breathing equipment.

Instead, I called back Tufts, and the same rep said she would now call another list of DME suppliers and see if she could find anyone who distributes the Libre.

Two days later, she called me back and delivered the news: No DME supplier in my network distributes this product.

She said I had one last option. I could write a letter to Tufts Health Plan Appeals and Grievance Department. Which I did, and I explained the importance of a CGM for a teenager who has an active, chaotic life and who is now driving – posing a risk to himself and others while exposing Tufts to significant financial loss in the event of a crash.

A week later, I received a call back from the Tufts Health Plan Appeals and Grievance Department. The rep told me that my appeal had no standing because Tufts in fact had approved coverage of the Libre, so I had nothing to appeal.

Yes, I explained, but the approval had no value because Tufts had approved a product that its suppliers don’t supply.

Doesn’t matter, said the rep from the Tufts Health Plan Appeals and Grievance Department. You can’t appeal something that has been approved.

“So, what can I do?” I asked.

“You can file a grievance,” he said.

“Will that get me the Libre?”

“No.”

“So, what exactly is a grievance?”

“It’s a complaint,” he said.

Of course.

So, to summarize: Tufts approved coverage of a product that I have to buy from distributors who don't carry it, but I can still file a grievance that will not be acted upon.

As I said, Joseph Heller would have appreciated it.

It seems the process would be much simpler if I could just buy the Libre directly from Abbott – eliminate the middleman and deal directly with the manufacturer. But Tufts apparently believes that using third-party distributors is cheaper than using the manufacturer, which is a fine theory indeed, except that the distributors don’t distribute the product.

Speaking of Abbott, I emailed an executive hoping that the company might advocate for me. She responded that the FDA did not approve the Libre for “pediatrics,” so Garrett should not use the product until he is 18.

“Pediatrics” is defined as the branch of medicine that cares for “babies and children.” Garrett is 5’10 and 175 pounds and old enough to drive, but he’s evidently not old enough or responsible enough to wear a small, potentially life-saving medical device on his arm.

Might as well just blow up the whole system, or go to single payer. Whatever comes next can’t be any more dysfunctional.

Abbott is selling the Libre through pharmacies, including CVS, Walgreens, and Walmart, but Tufts doesn’t cover the Libre through those outlets. The price of the reader is between $70 and $90, and the 10-day sensors run $36 to $40 a piece. That’s affordable for some people, but that’s also not the point. Our health care system should be about keeping people healthy, and for that to occur, our insurers should not be putting up barriers; they should be knocking down walls to promote the safety and well-being of their members.

I thought that was the end of my story, but it’s not.

I called the media representative at Tufts for any comment on my experience. Sixteen days had passed since Tufts had told me that it did not have any DME suppliers who carried the Libre, but three hours after I spoke to the media rep, a Tufts customer service rep called me and said it had now found a supplier who carried the Libre.

Media exposure does focus the mind.

The distributor is a company called Edgepark Medical Supplies. I called it and was transferred to someone who specifically handled the Libre, and I explained that my insurer had sent me to Edgepark so I could order a Libre for my son.

The rep, however, said that Edgepark would not distribute the product because Garrett was not 18.

Really? I thought the distributor’s job was to distribute.

I asked the rep: “What about the doctor? Does the doctor have a say in this? What about the payer? What about the patient?! Does anyone else have a say in this?”

No, he told me. None of them have a say.

There was no point in telling him that Garrett had already used the product, and it had worked beautifully; or that by any logical metric, Garrett is old enough, big enough, and responsible enough to use a device that could keep him safe and healthy.

In our broken system, logic alone won’t get you a Libre.