Stories like that of the Corleys are "very common," said Dr. Aaron Kowalski, Chief Mission Officer for the non-profit Juvenile Diabetes Research Foundation. "If you have an allergy to a certain insulin, to have it be unaffordable, to have no choice besides staying up to date on car payment or rent, that's unconscionable."
The Corleys and other families are the collateral damage from contract negotiations between drugmakers, insurers, and PBMs whose pricing terms are protected as trade secrets.
Now, diabetes patients who were managing well for years are suddenly calling Dr. Miller and his colleagues in increasing numbers saying their insurers have suddenly changed which insulin they'll offer the most coverage for, sending patients scrambling to try different drugs and treatment plans that will be covered by their insurance.
Some patients have been known to ration their insulin and do without basic needs in order to afford insulin, according to a petition by the American Diabetes Association calling for Congress to hold hearings on affordable insulin access.
Every insurance provider typically has one insulin that is their "preferred" brand, based on the best deal they're able to negotiate with insurers through their contracted pharmacy benefit managers, said David Mitchell, co-founder of Patients for Affordable Drugs, a non-profit advocacy group that accepts no industry funding.
In order to keep plan costs down for everyone, an insurance practice called "tiering" makes affordable the brand of a drug with the lowest cost but comparable effectiveness, said Dr. Aaron Kesselheim, Associate Professor of Medicine at Harvard Medical School. If patients choose the more expensive drug, they can still get it at the pharmacy, but they'll pay several times more out-of-pocket.
"It's not only attempting to direct individual patients to the most cost-effective care, it also helps, ideally, to keep down health care costs for the system as a whole," he said.
But it can also be a "double-edged sword," said Dr. Michael Carome, Direction of Health Research for Public Citizen. On the one hand it gives leverage to insurers to say: If you want to get on the list of approved drugs, lower your prices.
"The downside is that it can lead to the exclusion of drugs," he said, "particularly when the health insurer doesn't grant exceptions in cases where it's appropriate."
As far as the industry is concerned, Humalog, Novolog, and Apidra are all equivalent insulins in terms of how they lower blood sugar levels. So whether or not your insurer covers it comes down to the deal they can cut.
But not every patient can use the drug their insurer has decided they can take, or afford the one they want to. Drugs' formulations vary. Some patients may have a reaction to the inactive ingredients or find that one kind works differently in their body, forcing them to relearn years of mental math performed at every mealtime.
"It's okay to tier but there has to be a way to have exceptions so if that drug doesn't work for the patient in the judgment of the patient and physicians," said Mitchell. "Otherwise they're not putting patients first."