Please welcome back Dan Fleshler, New York-based longtime type 1, writer, media strategist and periodic correspondent here at the ‘Mine, with another take on hot topics in the diabetes news.

If your life depends on insulin like ours do, you won’t want to miss this savvy assessment of access issues.


It’s easy to imagine the stressed-out faces of people handling public relations for Eli Lilly, Novo Nordisk and Sanofi on February 20th. That’s when “Break Up the Insulin Racket,” a guided missile aimed at the three companies that control the insulin market, appeared in the New York Times. The column by Kasia Lipska—an endocrinologist at Yale—attacked the “Big Three” for the skyrocketing cost of insulin.

Lipksa’s piece was the most prominent in a recent spate of stories about high insulin prices. Taken together, they provided strong—though anecdotal—evidence that the cost of the medication is prompting more and more PWDs to drastically reduce insulin intake or even do without it. While this coverage provided a good overview of the problem, I searched in vain for convincing solutions.

The media flurry began on January 28th with a Marketwatch report on an earnings call by Lilly’s CEO, John Lechleiter, who said: “Yes, they (drugs) can be expensive, but disease is a lot more expensive.” D-advocates — including Kelly Kunik, Leighann Calentine and our own Mike Hoskins here at the ‘Mine — railed against the insensitivity and lack ofresponsiveness by Lilly and other insulin manufacturers to what may well be an emerging health crisis.

Several stories tried to explain how we got into this mess, including an overview by Diabetes Forecast’s Allison Tsai in the March/April issue, and a feature by David Sell syndicated by Tribune News Service. It’s impossible to list all the reasons for high insulin prices in this space. Indeed, the system’s complexity, and the need to be an extremely patient policy wonk to grasp it, is one important obstacle to reform. So is the fact that much of price-setting process is mysterious and hidden from everyone but insiders.

Still, the recent coverage yields two important lessons: 1) Just about all of the key actors despise the system; and 2) Everyone is blaming someone else.

The Blame Game

After insulin manufacturers set initial prices based on proprietary algorithms and formulas, an array of middlemen help to determine what PWDs pay. They include, as Tsai puts it, “drug wholesalers and distributors, pharmacy benefit managers, health plans, and sometimes large retail pharmacy chains, which all negotiate price discounts… During this process, the middlemen also take a cut of the profit from the negotiations, so they may mark up the drug or may not pass along deep price cuts to their customers.” Yes, they “may” or “may not” do those things, but you and I aren’t permitted to find out for sure.

Pharma executives claim they hate this system. They blame the increased prices paid by consumers on higher co-pays and the much higher deductibles that some people are paying under Obamacare.

Pharmacy benefit managers (PBMs), hired by insurers and large employers to administer drug plans and run mail-order pharmacies, also hate the system. But they blame Big Pharma. According to David Sell:

Express Scripts’ chief medical officer, Steve Miller, said the historical `social contract’ under which American health-care providers priced their products reasonably had `broken down’ because of `extravagant’ year-over-year price increases by drug companies.

I certainly hate the system, as the co-pays on my basal and bolus insulins have quadrupled in the last four years. Try as I might, though, I can’t figure out whom to blame. I do want to apologize, however, to the nice woman at my PBM, whom I screamed at two weeks ago when she told me the out-of-pocket cost of Apidra — which my endo wants me to try but is not in their formulary — would be $3200 a year.

Think Big

Other than fruitless finger-pointing and screaming, what can be done? Wade into the weeds of recent stories and you will find partial, piecemeal solutions. Lipska and Tsai seem to think cheaper, older human insulins are viable alternatives for PWDS. But those don’t work for everyone. Moreover, back in the day, as Kelly Close noted in a response to Lipska , many T1Ds were more prone to hypoglycemia when using them.

Some advocates are pleading with the pharma companies to police themselves or face consumer backlash. Lipska wants tighter federal regulation to curb price hikes and ensure transparency. But I think the diabetes community is missing the proverbial forest for the trees: only systematic reform of the health care system is going to make more than a tiny dent in the problem.

We have no choice: we need to think big because incremental changes and baby steps aren’t going to work. We already know what will work. The U.S. needs to join the rest of the sensible world and get the private sector out of the business of negotiating drug prices. The easiest way to do that is to establish a single-payer health care system.

There is a good reason why insulin prices in Europe are 1/6 of what we pay here: European countries rely on their governments to bargain down the costs of prescription drugs. Check out the Coffee and Insulin blog to learn how easy it is to get inexpensive insulin in France. The same is true in Canada and many other places that don’t have profit-seeking middlemen setting prices.

Is systematic change an impractical, pie-in-the-sky idea? Maybe. But it seems no more impractical than corporations reducing insulin prices out of the goodness of their hearts, or a divided Congress tightening regulations sufficiently to “break up the insulin racket.”

Wait a minute, you might be thinking. Don’t pharma companies need to make a profit in order to fund lifesaving research? Yes. But this analysis by Dr. John Geyman refutes the argument that a single-payer system will inhibit medical research. That argument should not be used to shut off discussions about meaningful change that significantly lowers medical costs.

There is reportedly a behind-the-scenes “dialogue” about insulin prices taking place between pharma companies and other key actors, including the American Diabetes Association (ADA). That’s good news. Still, it is hard to believe all of the different entities that profit from our corroded bodies are going to voluntarily and simultaneously change unless the entire, broken system is fixed.

To its credit, the ADA recently called for reforms that will help, in a statement on affordability that was released –perhaps not coincidentally—just three days after Lipska’s column appeared. It recommended among other things, that the federal government take over negotiating prescription drug prices in Medicare plans. Good start.

But when I asked the ADA what they planned to do about this problem, a spokesperson said they couldn’t comment beyond the new policy statement. Curbing insulin price inflation does not seem to be high on their lobbying agenda. Let’s hope they’re planning to change that very soon, and that other advocacy groups for PWDs also get into gear on this issue.

The organizations that represent PWDs’ interests in Washington are too small to play a leading role in the movement for national health care reform, even if they wanted to. But while they do what they can, the rest of us, as individuals, can find other ways to push for more affordable, accessible insulin and other necessities. For one thing, I suggest getting out of the diabetes-only niche and helping other organizations that are pushing for single payer models, like Physicians for a National Health Program and Health Care for America-Now!

Finally, in case you haven’t noticed, health care is a major issue in the current U.S presidential election. I’m not permitted to use this space to endorse anyone. Still, I will say that candidates pointing in the right direction don’t have either orange hair or a history of reading “Green Eggs and Ham” on the Senate floor.

D-advocates have many, vitally important policy priorities these days. But it is hard to imagine anything more important than ensuring that the lack of affordable insulin doesn’t kill Americans or make them sicker.