The Insulin Wars

by Danielle Ofri
New York Times op-ed

“Doctor, could you please redo my insulin prescription? The one you gave me is wrong.” My patient’s frustration was obvious over the phone. She was standing at the pharmacy, unable to get her diabetes medication.

We had gone through this just the week before. I’d prescribed her the insulin she’d been on, at the correct dosage, but when she showed up at her pharmacy she learned that her insurance company no longer covered that brand. After a series of phone messages back and forth, I’d redone the prescription with what I’d thought was the correct insulin, but I was apparently wrong. Again.

Between 2002 and 2013, prices tripled for some insulins. Many cost around $300 a vial, without any viable generic alternative. Most patients use two or three vials a month, but others need the equivalent of four. Self-rationing has become common as patients struggle to keep up. In the short term, fluctuating blood sugar levels can lead to confusion, dehydration, coma, even death. In the long term, poorly controlled diabetes is associated with heart attacks, strokes, blindness, amputation and the need for dialysis.

The exorbitant prices confound patients and doctors alike since insulin is nearly a century old now. The pricing is all the more infuriating when one considers that the discoverers of insulin sold the patent for $1 each to ensure that the medication would be affordable. Today the three main manufacturers of insulin are facing a lawsuit accusing them of deceptive pricing schemes, but it could be years before this yields any changes.

There are several reasons that insulin is so expensive. It is a biologic drug, meaning that it’s produced in living cells, which is a difficult manufacturing process. The bigger issue, however, is that companies tweak their formulations so they can get new patents, instead of working to create cheaper generic versions. This keeps insulin firmly in brand-name territory, with prices to match.

But the real ignominy (and the meat of the lawsuit) is the dealings between the drug manufacturers and the insurance companies. Insurers use pharmacy benefit managers, called P.B.M.s, to negotiate prices with manufacturers. Insurance programs represent huge markets, so manufacturers compete to offer good deals. How to offer a good deal? Jack up the list price, and then offer the P.B.M.s a “discount.”

This pricing is, of course, hidden from most patients, except those without insurance, who have to pay full freight. Patients with insurance live with the repercussions of constantly changing coverage as P.B.M.s chase better discounts from different manufacturers.

All insurance companies periodically change which medications they cover, but insulin is in a whirlwind class by itself because of the staggering sums of money involved. “Short-acting” is supposed to be a category of insulin, but now it appears to be its category of insurance coverage. My patient’s “preferred insulin” changed three times in a year, so each time she went to the pharmacy, her prescription was rejected.

On the doctor’s end, it’s an endless game of catch-up. Lantus was covered, but now it’s Basaglar: rewrite all the prescriptions for all your patients. Oops, now it’s Levemir: rewrite them all again. NovoLog was covered, then it was Humalog, but now it’s Admelog. If it’s Tuesday, it must be Tresiba.

It’s a colossal time-waster, as patients, pharmacists and doctors log hours upon hours calling, faxing, texting and emailing to keep up with whichever insulin is trending. It’s also dangerous, as patients can end up without a critical medication for days, sometimes weeks, waiting for these bureaucratic kinks to get ironed out.

Lost in this communal migraine is that this whole process is corrosive to the doctor-patient relationship. I knew that my patient wasn’t angry at me personally, but her ire came readily through the phone. No doubt this reflected desperation — she’d run out of insulin before and didn’t want to end in the emergency room on IV fluids, as she had the last time. Frankly, I was pretty peeved myself. By this point I’d already written enough insulin prescriptions on her account to fill a sixth Book of Moses. I’d already called her insurance company and gotten tangled in phone trees of biblical proportions.

This time I called her pharmacy. A sympathetic pharmacist was willing to work with me, and I stayed on the phone with her as we painstakingly submitted one insulin prescription after another. The first wasn’t covered. The second wasn’t covered. The third was. But before we could sing the requisite hosannas, the pharmacist informed me that while the insulin was indeed covered, it was not a “preferred” medication. That meant there was a $72-per-month co-payment, something that my patient would struggle to afford on her fixed income.

“So just tell me which is the preferred insulin,” I told the pharmacist briskly.

There was a pause before she replied. “There isn’t one.”

This was a new low — an insurance company now had no insulins on its top tier. Breaking the news to my patient was devastating. We had a painful conversation about how she would have to reconfigure her life in order to afford this critical medication.

It suddenly struck me that insurance companies and drug manufacturers had come upon an ingenious business plan: They could farm out their dirty work to the doctors and the patients. Let the doctors be the ones to navigate the bureaucratic hoops and then deliver the disappointing news to our patients. Let patients be the ones to figure out how to ration their medications or do without.

Congress and the Food and Drug Administration need to tame the Wild West of drug pricing. When there’s an E. coli outbreak that causes illness and death, we rightly expect our regulatory bodies to step in. The outbreak of insulin greed is no different.

It is hard to know where to direct my rage. Should I be furious at the drug manufacturers that refuse to develop generics? Should I be angry at the P.B.M.s and insurance companies that juggle prices and formularies to maximize profits, passing along huge co-payments if they don’t get a good enough deal? Should I be indignant at our elected officials who seem content to let our health care system be run by for-profit entities that will always put money before patients?

The answer is all of the above. But what’s most enraging is that drug manufacturers, P.B.M.s and insurance companies don’t have to pick up the pieces from the real-world consequences of their policies. That falls to the patients.